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It's Kerry...the hospital has a laptop that I can use from time to time, so I can hopefully do a few updates here and there, along with Bett, still.
We've been moved into a private room on the pediatric surgery floor. We're room number is 9138 and the room is rather small, but we'll manage. Sicily is resting and still seems to be comfortable. We were very amazed that she was released from PICU as quickly as she was, but she is the driver on this journey and she has the road map.
My updates might be short for a bit as I don't know how reliable the internet service is going to be here in the hospital, so I'll do my best. Thank you all so much for all the thoughts and prayers...they have been heard and answered and are what are sustaining us through all of this. Couldn't do it with out all of you!
Rough night, good morning. I expected sleep depravation in my first night in the hospital, but not to this level. Between beeping monitors, nurse visits, and things that go bump in the night, i didn't sleep more than 20 minutes at a time. Sicily ran a temperature of 103 degrees part of the night. The nurse was concerned with her right lung sounding a bit raspy. She wanted Sicily to breathe into an apparatus to inflate the lungs. Sicily was not in a cooperative mood. If she wouldn't perform the exercises, they told me to at least get her sitting up in bed. I was successful in moving her to a sitting position.
The surgeon Fellow came in later and removed the bandage from the incission. I was expecting worse. Got to go.
FRIDAY, NOVEMBER 21, 2008 10:03 AM, CST
This is Kerry. When I arrived at the hospital this morning, Sicily was propped up in bed and was awake and talking. She seems to be doing pretty good, although the nurse was in taking a bunch of blood and urine samples for tests...want to make sure the fever isn't due to some infections.
Patrick and I just finished having her sit on the side of the bed and dangle her legs off the side. She cooperated with us and didn't seem to mind too much, even though when I asked her if she was comfortable she shook her head no. She is starting to say she is thirsty but as long as she still has her "whatchamacallit" tube in her nose to her stomach, she can't have anything, so we're not going to drink anything in front of her. I told her that she couldn't have anything to drink until the tube was taken out and she replied, "I don't want it out!" "WHAT?" Funny girl! I'm relieved that it doesn't seem to bother her too much.
The surgeons want her up walking today but she can't until she loses her epidural, and I don't know the plan for that yet. She's watching a DVD of the Christmas Story right now. She's already watched Home Alone. Thank heaven for the TV and DVD player! She has been awake most of the morning, so it is nice to see her with her eyes open and able to converse. Her brow is furrowed from time to time and her mouth hasn't formed into her beautiful smile yet, but I know it's in there and will surface soon.
My prayer request for today is that she continues to heal with no infections and that her lungs be clear as to help ward off pneumonia! Patrick's getting ready to head off to take a shower and try to get a little rest. My sister and brother will come keep us company for awhile. I'll keep updating whenever we hear anything. Bless you all!
FRIDAY, NOVEMBER 21, 2008 11:07 AM, CST
This is my second posting so far today...right now there may be several or more a day. Having this laptop in Sicily's room makes me feel like I have everybody in here with us. What a blessing. I think Disney donated the computer to the hospital for parents to use...what a nice gesture!
Sicily is resting now. She's moving her legs about and still has those body spasms quite often. She'll be snoring right along and then her body jerks. I don't know how restful that can be. Before she decided to take a nap, she wanted to open a gift that Patrick's boss and co-worker from Broken Arrow personally delivered yesterday. It's a cuddly light brown Build-A-Bear that they named "Faith." She is now dressed in her pink chenille rob and bunny slippers...and laying right on top of Sicily as she's sleeping. She loves it! Her other bear "Hope" is by her side, as well. She is surrounded by Faith and Hope...she will be healing soon!!!
I have to share a funny little story yesterday. I was down the hall when the surgeon and one of her fellows that assisted in the surgery came into the room to check on Sicily. Patrick was in here with her when they came in carrying two beautiful bouquets of flowers. Her surgeon, Dr. Puffinbarger (or Dr. Puff, as she wrote her number on the board in the room) said that they road the elevator up with the delivery person and found out the flowers were for their patient so they decided to take them. I just thought that was so funny! But that is exactly something that could be expected from this surgeon.
I think she is absolutely precious! She has such a way about her that makes you feel calm and at ease. And she makes you laugh. Who'd of thought we'd be laughing when she came out of surgery last Wednesday to talk to us? She is definitely where she's supposed to be! Anyway, I think I could write a book about some of our experiences! I'm sure there will be many more!
We've had an interesting afternoon. Sicily woke up from a little nap shaking and kicking and crying out. She kicked so much that her catheter came unplugged (not out) and soaked her bed. She cried for mommy and I was right by her looking her directly in the eyes and she looked like she was looking right through me. She pointed to Uncle Kevin standing against the wall and Aunt Cathy asked if she wanted him and she nodded yes, so he came to her bed side and tried to comfort her. We had two nurses trying to figure out what was going on. It was a bit of a scary moment.
The pain management team came in as well as the surgery resident. They decided to go ahead and remove her epidural and administer her pain medication of morphine via her IV. She is supposed to get her catheter out soon, but they haven't removed it yet. With her epidural removed, we should be able to have her walk around a little later.
Cathy and Kevin were able to get Sicily to blow some bubbles for a little respiratory therapy. She didn't know why we were doing it, but she seemed to enjoy it. Now we're just waiting for some "sounds" to come out of her body. She can't have her g-tube (the watchamacallit) removed until she releases some of the gases trapped in her little body. Crude thought, but it's an absolute necessity. We've told her we'll celebrate when she does.
The hospital Chaplain came in a bit ago and prayed over Sicily. We're still patiently waiting to see if we can get moved to a bigger room. I'll post if there are any other changes or events. Have a great evening!
FRIDAY, NOVEMBER 21, 2008 04:16 PM, CST
Here I am, again...
Dr. Puffinbarger came in and sat down to talk to us. As she walked in the door she said she had kind of good news on the patholoy. The left kidney, the one with the nephrogenic rests, pathology came back completely clear...nothing left. The right kidney, on the other hand, still has live cells.
She will need radiation and we're not sure if her chemo protocol will remain the same or change to something different. Over all, the news was okay... could have been worse, could have been better. We'll take it and do whatever we need to do!
Keep the gum handy and the prayers rising! We'll still need them!
It was my turn on watch last night...can't say it was my turn to spend the night as we don't sleep much at all! Sicily did overall okay. She doesn't seem to need the pain medication very often. We were able to get her out of bed and assisted her to the bathroom. Her vitals remain stable, so that is good.
Patrick and I and the nurse just finished helping her to the bathroom again, and she threw up while in there. She seems okay now, just have to watch her.
Grandma Zeka and Aunt Bett brought the kids to the hospital this morning from home. We were able to visit for awhile and then they headed back to Kansas. Isabella and Elias are here with us now at the hospital and Corinthian is watching his cousin Jaden's soccer game, and they will be up here soon. Sicily's watching Home Alone...I thought I brought enough movies, but we're going through them pretty fast and will probably have them all memorized word for word by the time we leave!
Latest update - please pray for Sicily and her family.
SATURDAY, NOVEMBER 22, 2008 09:40 PM, CST
Sorry I wasn't able to journal much today...pretty busy. And when we weren't busy, I just kind of sat and stared at Sicily laying in bed.
She went without pain meds for most of the day. We left it up to her to tell us if she was in pain and it seemed every time we asked, she shook her head no. As the day went on, she started to reposition herself in bed more and get herself comfortable, when possible. Her bowels are still not moving so they will keep her NG tube in her stomach a bit longer.
It was hard to see her throw up with a tube coming out of her nose knowing that it runs all the way down to her stomach. The surgeons did tell us before surgery that by the fourth or fifth day she might start throwing up...she is right on schedule! I still don't have a clue as to when she will be released. Not anytime soon if she can't make some "sounds!"
The oncologist is supposed to meet with me sometime on Monday. I will have to meet with the doctor by myself as Patrick will be taking the kids home so they can attend school on Monday. We really don't have a choice.
I've never felt so responsible for a person's life...Patrick and I have and will make decisions about Sicily's life...decisions that will hopefully sustain her life!
I hate to even bring it up, but there are definite concerns about her remaining right kidney...folks, it just doesn't sound good. Nothing is definitive yet as the pathology has still not been fully determined. But it was not what we thought we were going to hear.
Patrick and I naively let our optimism gain the upper hand, and this little bit of news came as a blow. We don't know what's going to happen! I go to bed sometimes thinking this whole experience has to be a bad dream and I'm going to wake up some morning and let out a huge sigh of relief.
Instead, I wake up and find my precious little baby laying in a hospital bed, cords and tubes attached to her and running in all directions around her...machines beep in the night and awake us from what little sleep we seem to recieve...she looks at us with an almost blank stare and we wonder if she is upset with us for putting her through all of it!?! Will she ever know we are doing this and did this because we love her more than life itself? How can a three year old child understand?
Some days my strength matches that of the strongest bridge...I can bear the weight of whatever may travel across me...other days, I'm as fragile as a snowflake and am ready to melt at the slightest bit of heat.
Sleep deprivation plays a key role in the latter, as it would for any normal human being. But as I told Patrick tonight, I have to force myself to be strong some moments, as I cannot let Sicily see the fear in my eyes, then she will become fearful, too!
It takes everything I have not to throw my hands over my eyes and pretend not to see what is going on around me! I told Patrick one of my key strategies with Sicily is to still be mommy...the mommy she is used to...the mommy that is firm when firmness is needed...the mommy who is loves her and who will do anything for her, but also does what is best for her.
When we decided it was time to get her out of bed this evening to go for a walk down the hall, she naturally refused. But we were firm and gentle and she ended up being easily coerced out of bed. She did really good and proved to herself she could do it, with mommy and daddy holding firmly to each hand. I left the hospital soon after that, and on my way to my sister's house,
Patrick called to say that Sicily was complaining of her stomach hurting. I actually took that as a good sign...the surgeons said she may need the morphine more when she starts getting up and about, and that seems to be the case. Walking around could help get certain organs moving again, and we could get our walking papers. My expectations are low, so as to not get too disappointed if we find ourselves still inpatient come Thanksgiving. I'm not actually worried about that, I just want my baby to feel better, and feel better quickly!
Thanks for listening to me ramble and vent...that's why I would feel lost without my CaringBridge!!! You all have been beyond amazing with all the support coming in so many different forms, but my favorite, naturally, are the prayers! May God Bless You All! I'm going to go try and get a good night sleep, so the bridge will not crumble or the snowflace melt!
It was a better night for Sicily. Her only complaint is the nausea feeling. She repeatedly thought she would get sick but only dry-heaved. Her vitals continue to be good and she used the potty during the night with our help. I share Kerry's opinion, we probably won't get released as soon as we hoped.
For all the church-goers, say a few extra words for Sicily this morning. She's going to need a little extra boost to get past this stage.
I'm doing the happy dance...Sicily skipped over the "toots" and went straight to the major movement! I was talking to Patrick on the phone when she made her statement. I was shocked! What a huge relief...we can hopefully make strides tomorrow that should allow us to leave sometime soom, I hope!
I'm on such a high it's silly! If someone sent out a specific prayer for this...THANK YOU!!! ; )
Busy this morning as it's Monday and there is a lot of checking up to do from the weekend.
Dr. Puffinbarger came in to check on Sicily and did a glycerin supp. to help her along with her bowels. Didn't take long as we've already been to the bathroom twice. While Dr. Puff was here, Dr. Meyer, Sicily's oncologist, called her and she stepped out into the hall to speak with him, but was still in earshot. Nothing really was said that she hadn't talked to us about. She said he will be up sometime to talk to me and was going to try to sit down with the pathologist to go over the initial report.
She again brought up the possibility of going back and completely removing Sicily's right kidney if it looks like chemo might not work. That is still such a scary thought that I don't even want to think about it! But it might be necessary. I'm hoping we could speak with a pediatric nephrologist to help us understand it all. I'm going to wait patiently to talk with Dr. Meyer even though my nerves are already on edge!
Meanwhile, I have a feeling Sicily and I will be taking several walks today as we just returned from one. There is a lot of construction going on around here and we stood and looked out a hallway window at a gigantic crane moving around. She enjoyed watching it. We may just have to get a couple of chairs and park ourselves there for awhile, if she feels up to it. I'll jump back on here after I talk with Dr. Meyer.
The news is not exactly what was hoped -- please keep praying.
MONDAY, NOVEMBER 24, 2008 05:26 PM, CST
Dr. Meyer came for a visit a bit ago...I'm still trying to absorb all the information. The news infact is not what we wanted.
Sicily's tumor in her right kidney came back unfavorable histology, stage III...it has anaplasia cells. It's too early to make the call, but Dr. Meyer is leaning towards going back to surgery and removing the rest of the right kidney. He won't be able to meet with the other couple of doctor's who will be part of the team responsible for making the decision until Wednesday...so we will try to patiently wait.
If they indeed decide to do a second surgery, Dr. Meyer is going to press for as soon as possible. That could mean Friday or that could mean sometime next week, don't really know. The option of continuing to try to treat this kidney with chemo doesn't sound very promising. The level of toxicity of the drugs needed could actually do more harm to Sicily's body than good. Even though I hate the thought of going through this surgery all over again, if it can heal my baby, then it's what needs to be done!
I of course posed the question of whether or not Sicily could have normal renal function on two thirds of her remaining kidney, and Dr. Meyer said it's possible, but only time would tell. A transplant down the road did become part of the conversation, but Dr. Meyer also reminded me that we will be taking this one step and one day at a time, so I won't let my wandering mind get too far ahead of the current events!
I know I've asked so much from everyone so far, but we are in need of so much more...the prayers just can't stop! And I know they won't! We love you all and couldn't get through this without each and every one of you! You have all helped carry this heartache...one in which I hope we can someday mend!
This morning's update from daddy ... thanks so much for your prayers.
TUESDAY, NOVEMBER 25, 2008 08:19 AM, CST
Sicily went most of the night without any major stomach problems or pains. The doctors gave the order to remove her ng-tube then she promptly threw up again. They have put her on anti-nausea meds while the doctors decide whether to remove the tube. One step forward, one step back. She is in good spirits; demanding ice, movies, and to go walking around the hospital floor. I still think we're getting close to getting released.
It's Kerry...I arrived at the hospital around 12:40 and met Patrick and Sicily in the Fluor department of radiology. Sicily had to have a fluoroscopy...an imagining technique used to obtain real-time moving images of her stomach. They injected her with a contrast (a sort of die) in her port.
Sicily's stomach seems to have shut down and is not wanting to work. They are currently checking for blockage to rule that out. She still has her NG tube and can't have it removed unless they can get her stomach to move. I'm just an old mom, but it seems to me that she needs food and liquids to get it going again, but she can't have that because of the NG tube. I feel like we are tied up in a Catch 22...we can't do this because of that, and we can't do that because of this. I'm really frustrated!
She just asked me if I'm going to spend the night with her, and I said it would be either me or daddy (I'm starting to get sick) and then she asked me where I'm going to sleep. I said I sleep at Aunt Cathy and Uncle John's house, "What about me...where will I sleep?" I had to tell her here at the hospital until we can get her better. She said, "I don't want to be here anymore!"
We haven't told her that she's most likely going to have another surgery soon...I don't want to bring her down. Besides, we're not positive it's going to happen, even though it's what we want. And if it does happen, no idea when. The good news is that if she does have another surgery, they think they will go into her right side instead of through her current incision as to not upset her bowel and intestine. It's so screwed up already I don't think it can take another blow!
I'm sitting here waiting to hear back about what they think her stomach is up to. Meanwhile, she threw up the contrast. Again, very frustrating!!! I'll post as soon as I learn something of interest!
Sicily will have her second surgery next Wednesday, which is Dec. 3rd, I believe. It may be a little more delicate of a surgery since they are going back in so soon. They are concerned about scar tissue. It could go smoothly, it could be difficult.
We are still waiting to see the GI doctor...always a waiting game. We may be stuck here until her surgery next week...we hope not but we'll do what needs to be done. If that's the case, we'll be inpatient for three weeks. Other's have done longer!
Sicily's Uncle Larry and Aunt Jane came this morning for a very much needed visit. Sicily and Patrick were in need of some company before I could get there. Also, another Wilm's parent and child visited. Aunt Jane played cards and hide and go seek (under the covers) and even painted Sicily's fingernails and toenails a beautiful hot pink. Sicily's disposition seems happier when other family members are around than when it's just daddy and mommy with her. She gets easily upset with us, which is not something out of the unusual.
Another Wilm's parent described hearing the news of unfavorable histology is like hearing the word cancer all over again...the reaction is the same overwhelming emotions. Right after I heard the news, Sicily's cousin, Jamey and her daughter Kaitlyn, came for a visit at just the right time. I did not need to be alone then. God is always watching out for us!
I'll journal again after we get to talk to another doctor, that is IF we get to. The day before Thanksgiving isn't the best timing!
This evening's update - thank you all so much for your prayers.
WEDNESDAY, NOVEMBER 26, 2008 05:54 PM, CST
Sicily has been getting the drug Reglan since yesterday evening. The GI doctor wants to give it the possible 72 hours it may take for it to start to work. That means we will sit around and wait until Friday evening to see if it works. If it doesn't, we'll go from there, maybe do a scope. I'm praying for a rapid response because we need out of here before the next go around.
Dr. Meyer also came in this afternoon and confirmed that we will be going ahead with the surgery, as we pretty much already knew. He said he consulted with Dr. Dome in Washington DC and the consensus among the surgeons and pathologists was the same, remove the remaining right kidney.
Nothing really new to report except the GI doctor did write an order to let Sicily have some clear liquids as long as we keep the suction on the ng tube...she's already had a red popsicle and it immediately started coming up the tube. This doctor finally said what I've been saying for days...if the ng tube is in with suction, whatever liquid goes in will be sucked right back out! Yeah for this doctor!
I'm going to stay the night with Sicily tonight. If you're wondering if it feels depressing to be in the hospital over the holidays...I won't lie...it definitely does! It stinks!!! It doesn't even feel like Thanksgiving to me! I just want to go home and cook in my own kitchen and sleep in my own bed and soak in my own bathtub. I actually want to do laundry because that is something normal! Staying at my sister's house has been an absolute blessing, but there comes a time when you can't help but feel you are infringing, no matter what they say! I want our life back! But this leg of the journey is going to be rough!
Recovering again from another surgery is more than I want to think about right now! Then radiation, and then more chemo...more powerful chemo. Her next protocol may require her to be inpatient just to receive the chemo, haven't been told how that all goes down. Her numbers may drop more drastically and she may need to be hospitalized for that. I'm going to have to work hard to get myself geared up for what's to come.
I guess I'm just having a bad evening and I'm letting everything get to me! I pray everyone has a blessed Thanksgiving and please be thankful for everything you have! You never know what tomorrow may bring!
I will continue to pray for little Sicily and of course mom and dad. I pray that God guides the surgeon's hands.
I spent Christmas in the hospital with my sons two years. It is very difficult. Just doesn't seem like a holiday. Remember I am here and I will pray,
I am very thankful that we live in a day and time where there is so much hope and support for what we are going through!
Sicily's NG tube was just pulled so we are keeping our fingers crossed and saying an extra prayer that she doesn't start getting sick at her stomach. If we get over this hump, we may get to go home hopefully by Saturday and have a few days to regroup and have some much needed family time!
I'm getting ready to head over to my sister's house to get cleaned up and enjoy a wonderful dinner. My sister Christy and niece McKinsey will come and sit with Sicily some this afternoon so we can spend a little of the holiday together with our other kids and family.
Love to you all and thanks again for all the support!
Updates from Thurs. & today - thanks so much for your prayers.
THURSDAY, NOVEMBER 27, 2008 09:03 PM, CST
Patrick and I were able to enjoy a Thanksgiving dinner together as my sister and part of her family spent the afternoon in the hospital with Sicily. She was in 7th heaven. She had their full attention and didn't have a dull moment. I asked my sister when I called in to check if Sicily had taken a nap...no...but she did list all the things she did do...played with playdoh, went on walks, played with every puzzle in the play room...the list goes on. I think she was actually disappointed when Patrick and I returned. But that's okay, we all received a much needed break!
When I left, she had curled up on the make shift couch bed and was getting ready to drift off to sleep. I kidded her and said, "Well I guess daddy gets to sleep in your hospital bed!" And she nodded her head "yes!" I think she is more than tired of being in that bed and I don't blame her. I dread the approaching time of when we have to tell her that we are going to do this all over again. I told Patrick that I don't think we need to say anything until next Wednesday morning. I don't want her to start to worry and not enjoy her time away from hospital beds, beeps and buzzers, cord and wires and everything else associated with a lengthy hospital stay. My own mind hasn't yet come to grips with it! But it must be done, so we'll saddle up and ride again.
I have to share how sweet Sicily's older brother, Elias, has been through all of this. Because of the situation, there may come a day when Sicily may have to undergo a kidney transplant...that is just a possibility and we've had to discuss it. Patrick talked to the kids about it as he was bringing them to OKC on Monday. Corinthian and Elias immediately, without even pausing, said they would give their little sister a kidney. As I drove them to my sister's house that same evening, Elias asked when he could give Sicily his kidneys? I explained that she would only need one, and he replied, "I don't mind if she has my kidneys!" Again, I explained that he needed to keep one of his kidneys for himself. The next day, he came to visit Sicily and again asked when he could give her his kidney. When that little guy sets his mind to something, he's ready to go full speed ahead.
It melts my heart to think how truly sweet and innocent this seven year old boy is. He has no idea what the process would be, but if his little sister needs something then he will try to give it to her. How precious is that? Anyway, there are many bright spots in our tunnel of darkness right now...flashlights, if you will. And I will let those little flashlights lead us through this and we will see the sun again soon one day! Love to you all!
FRIDAY, NOVEMBER 28, 2008 09:15 AM, CST
Sicily had a good night's sleep; on my bed! She won't even get close to her old hospital bed. This morning, she has already had apple juice, gatorade, and cherry jello. So far, so good. If she is able to keep those liquids down, she can try solids for lunch. We probably have an outside chance of going home today; more likely on Saturday. More later.
FRIDAY, NOVEMBER 28, 2008 09:17 AM, CST
Patrick stayed with Sicily last night and reported this morning that they had a pretty good night, except she threw up at around 4:00am. They are trying to get her to eat some jello and if she can hold that down, maybe something solid for lunch. Problem is she won't eat the jello right now and she usually likes jello. I talked to her on the phone and asked her to eat but she just said, "not yet." I don't know if she's afraid if she eats she will get sick, or what. I also asked her if she was tired of being in the hospital, and of course she said yes, so I told her she needed to eat before they would let her go. Please pray that she will eat something today and be able to keep it down. We've got to have a little break away before we spend another week and a half or so in the hospital for the next surgery!
I'm trying to recover from my morning jog with Sicily. She was feeling so well this morning, she led me on a 3-lap obstacle course around the 9th floor. We were dodging IV towers, mop buckets, and lunch trays. How she could go from the worst night on record to nearly normal in such a short time frame only God knows.
My niece Whitney is coming after lunch to stay with Sicily while i get cleaned and refreshed at my bro/sis-law's house. Whitney said her dad (my brother Larry) was coming for a visit this afternoon too. I am hopeful Sicily will remain in good spirits during my absence.
We feel so fortunate to have so many friends and family willing to support us. It will be difficult for us to truly repay everyone.
Early morning update - rough night for Sicily and family.
SUNDAY, NOVEMBER 30, 2008 03:45 AM, CST
I'm not the blogger Kerry is, but I couldn't wait any longer to post this (it's 3:45 am for those not looking at the time stamp). My cousin Anita emailed me within days of Sicily's diagnosis and told me to be prepared for an emotional roller-coaster. Well, the last 24 hours have been just that.
Minutes after my "3-lap jog" post from Saturday, Sicily began feeling poorly again. Whitney, Larry, and Jane (my niece, brother, and sis-in-law) arrived shortly after and we watched Sicily drift off to sleep. I went to get a shower and lunch while they sat with Sicily. During my return drive to the hospital a few hours later, I had this good feeling that when i entered the hospital room Sicily would be either still sleeping or playing with her guardians. Well, i was severely disappointed. Larry and Jane said she had awaken from her nap and began vomitting again and complaining about pain in her tummy. Sicily continued to be sick but i insisted Larry and Jane leave so Larry could get home to watch the OU game.
After they left, I talked to Kerry a few times and informed her we were taking 2 steps back with Sicily's condition. By 6 pm, I felt the big "D" starting to attack me. I'm a pretty stable guy, but I felt myself beginning to slip into a mini-depression. We no longer were battling cancer, we were just trying to beat nausea; and losing big time. How could we ever expect to defeat cancer if we couldn't simply recover from surgery? I hit bottom at 7 pm when a new nurse walked in (hospital nurse shift change is 7 am / 7 pm) and Sicily promptly cried out in pain and threw up a couple ounces of yellowish stomach bile. This new nurse (name is Juquita) said, "I can give her something for that, it's called Phenergan, and it will calm her stomach and let her relax and sleep". I said, "sure, we've been here 11 days and the plethora of drugs they've thrown at her haven't worked....let's add another to the list". Well, by 7:30 pm Sicily was sound asleep. She hadn't slept soundly in at least a week. I kept putting my hand on her chest to make sure she was breathing. I had become quite accustomed to hearing her cry out every 30 minutes in pain or need to puke some bile.
She awoke about 3 am to use the bathroom and became a little restless, so i asked Juquita if she could have another shot of Phenergan. She's sleeping soundly again. Juquita was surprised no one had suggested Phenergan until now. I told Juquita she is Sicily's guardian angel because she rescued her from a nasty abyss.
It's amazing how much joy such a small improvement in her condition gives me. Only time will tell if this improvement will carry over to tomorrow, but i'm celebrating anyway. Lately, victories around here have been few and far between.
I'll post again later in the morning. Peace, Patrick.
p.s. For any Mizzou fans (not that anyone would claim to be one), we rocked you today. Rock Chalk Jayhawk Baby!
SICILY IS NOW IS SURGERY BECAUSE OF A BOWEL OBSTRUCTION - PLEASE PRAY.
SUNDAY, NOVEMBER 30, 2008 04:47 PM, CST
Hi all...it's Kerry. At about 4:00pm Sicily was rolled back into surgery. Her CT scan showed that she has a mechanical bowel obstruction. I forgot the medical term for it, but her bowel has basically telescoped on itself.
She also has several abscesses (sp) which have been explained as pockets of infection somewhere around the area of her liver and pancreas. They are not sure if they will be able to get to the right kidney to perform the nephrectomy, but if things go well, they may try. Otherwise, Sicily will have to have a third surgery soon.
I'm a little on the numb side right now. Things have happened so fast today that I haven't even had time to process it all. I made it back to the hospital a little after 3:00. We have no idea how long this surgery will take. I guess I am just partly relieved that they were able to figure out what was going on with her constant vomiting. I'm praying extra hard that they will be able to remove her kidney so as not to have to go through this again.
Apparently, Sicily has a very temperamental bowel system...who'd of thunk? Patrick just came in...everything is going good. The abscess turned out to be old blood, they've removed the kidney...things are happening fast...I'll post more later.
Surgery went well...details are many. Sicily will be under sedation for quite some time as she is going to remain intebated. Now well patiently wait and recover and keep praying that all will go well! I'll update more later!
SUNDAY, NOVEMBER 30, 2008 08:44 PM, CST
I don't know if I can even begin to explain all that occurred today. It has definitely been a whirlwind...to say the least. But I feel we are completely in God's hands today and He is taking care of us.
I am sitting with Sicily in the PICU right now were we plan to be residing for the next couple of days. She is hooked up to more bells and whistles and cords and tubes than I have ever seen. It seems like something is dinging or ringing every few minutes. It is hard to see her in this state, but I know she is in the process of healing and every one of those bells, whistles, cords and tubes are in place to help her recover. She has opened her eyes a few times and has even nodded her head when we've asked her a question. Her room is filled with machines and computer screens with all sorts of different colored moving wavy lights and flashing numbers.
I doubt I'll be getting any sleep, but at least I am close to her, and hopefully she knows that I am here. That was one of my biggest fears as I sped to the hospital this afternoon was that I wouldn't be able to kiss her and tell her I loved her before she went into surgery. I was so afraid she would think that mommy was not there anymore since her heroic daddy has been her primary care giver for the past few days. I did make it in time to say those important words and kiss her on the forehead. But it was not without incident.
No...I was driving as fast as I would let myself go on I-44...but I wasn't the only one. Yet, I managed to attract the attention of the highway patrol man hiding on the other side of an overpass. I knew immediately when I passed him that I was going to be his catch. As soon as I saw the twirling blue and red lights I pulled over, rolled down my window and pulled my license out of my purse. I also grabbed a little prayer card for Sicily that I had made that had her CaringBridge site address on it and a picture of her. The highway patrol officer came to my passenger window and tapped on it lightly. Startled, I rolled it down. The tears flowed as if I had any control over them. He politely informed me that the reason he pulled me over was because the speed limit is 75, and before he could tell me how fast I was going, I blurted out through tears and sobs that I was trying to get to OU's Children's Hospital because my daughter was about to have another surgery.
He looked at my license and the little card I had handed him and then said he was going to write me a little warning ticket. I blubbered back, "Okay." He then asked for my proof of insurance, and as my hands trembled I started rummaging through my purse and the glove compartment until I finally found it. As I started to hand it to him, he extended his arm out to hand me back my license and prayer card and tapped my door and said, "I'm going to let you be on your way. But, you won't do her any good if you don't make it there! Buckle up!" With that he turned around and walked away.
I had just met one of God's Angels dressed in a highway patrolman's uniform. I indeed slowed down and went the speed limit. Not ten minutes later, my sister called to tell me to slow down and take my time because the surgeon said it would be at least another hour before they would have the team ready for surgery. Funny how life happens.
Also as I was driving, the weather was cold, windy and spitting rain from time to time. I was saying the "sandwich prayer" (Jesus, Sicily, Jesus) over and over in my head when the sun peeked brightly through the cloudy sky. I knew God was with me.
Elias, of course, in the backseat exclaimed, "Mother nature can't make up her mind." He also asked if we were going to the hospital to give her his kidney? I explained to him that she doesn't need it yet, and hopefully never will, but if that time does come, he would have to be tested first. He was okay with that. He still just melts my heart.
Well, it's getting late and I need to try to get a little rest. Pray for a restful evening for Sicily and that her little body mends in God's hands!
Sicily and I were able to sleep off and on through the night. She was restless despite the meds she was on, but they wanted her to be easy to awake when needed. Her little tummy looks better than I thought it would, not very distended. Doctors are pleased with that, too.
About twenty minutes ago, she was exacerbated (sp?) and I know that makes her a lot more comfortable. We couldn't believe the first thing that came out of her mouth...she had us laughing and crying at the same time...she said, "I'm brave!" Even the doctor said that was a tear jerker.
She has been talking to the nurses and so far has told them that she has a cat and a scooter at home and she wants to go home. I pray to God that we are truly going to be on our way to healing this time! I'm hoping to be able to talk to the nephrologist sometime today about what to expect with her 2/3 kidney.
Sicily is currently doing fine in the urine department, so that is good, but her blood pressure and heart rate have been elevated since this last surgery. Dr. Puff said that that is normal considering the surgery she just completed, but still wants the kidney expert to weigh in on it.
We're expecting Patrick and the kids in for a visit here shortly, so I'd better go. I'll keep posting whenever we find out other bits of news. Keep the prayers rolling...they're working!
Sicily and I have had a decent day. She's been comfortable most of the day with her little personal morphine button. They didn't do an epidural with this last surgery as they were concerned about an infection and she seemed to have had a little weird side affect with the last one. The morphine seems to be taking care of things alright with our little high tolerance pain patient!
When Patrick was in we were able to meet with Dr. Martin, pediatric nephrologist. He's the only one in the state of Oklahoma. Nice doctor. He was able to answer a lot of our questions about Sicily's remaining kidney and its function. He said that she should do alright with it until her teenage years when she has more muscle and increased blood flow and that might wear out her kidney if the work becomes too much. That would be the time to start talking and thinking about a transplant. If or when that time might come, the donor has to be at least eighteen years of age. So Elias, who is three and a half years older than Sicily, may still get his wish to give her one of his kidneys some day. Until that possible day, we will work hard to protect her remaining kidney.
Our main goal and prayer request for this week is to get this little girl up and around, eating and drinking, and all the other "normal" functions needed to get thrown out of a hospital.
Looks like we will be moved to a regular room somtime tomorrow. That is always nice, on my part, because in the PICU, we can't use the patients bathroom...I have to trek down the hall, turn three corners and go through double doors to get to the bathroom. Not a fun trip at 2:00 in the morning.
Sicily vitals are doing pretty good over all, but her heart rate continues to be high. That could be pain related and due to the fever she keeps running. But she is getting Tylenol suppositories and her temp is currently down. Her heart rate ranges between 155 to over 160. Too high for a little gal her age. Hope that resolves itself soon. Sicily talked to her daddy and siblings on the phone a bit ago. Everyone misses each other! We'll all be home together soon!
We are moved to our new temporary residence, room #9168...and it's one of the bigger rooms, thank goodness! Sicily and I are settled in and she is taking a little nap. The nurse brought us some bubbles to use for respitory excercises, again, and she really likes doing that. Before she dosed off, we did it for about ten minutes.
Last night was probably the best I've slept in the hospital so far these almost past two weeks. It was all because of another one of God's anges! Sicily's nurse last night in the PICU was named Summer. She and her family are from Minnesota, and I could tell by the slight accent she still carried with her. All the nurses have been nice and very helpful so far, but there are some that you immediately feel a bond with and they leave an impact.
Last night, while Summer was checking Sicily's vitals we engaged in small talk. I asked her what brought her to Oklahoma from Minnesota, and her reply was, "this job!" She worked in a PICU before having children and when she decided to go back to work, there were no PICU positions available in the hospital she had previously been at. So, she and her family moved here specifically for her job. I said, "doesn't working in this environment get stressful and hard at times?" She replied, "that's what I crave."
She continued by saying that one of the reasons she wants to work in such a setting is because she is a mom herself and she can't imagine what it's like to watch your child lay there as my child was. She wants parents to know that their child will be taken care of and cared for while she is on watch. There was such a reassuring sense about her.
I slept pretty good, as good as a person can sleep on a fold out chair bed, but I still woke several times and laid still in bed with my eyes closed as I listened to how Summer interacted with Sicily. Several times I could feel the tears well up in my eyes...she was so good to her. It takes such a special person to do what she does and I truly believe these wonderful people are a very selective group of God's angels. I thank God for crossing our lives paths. There is so much good out there, even amidst such sadness.
I don't want to look back on these days spent in the hospital as lost time. It has been hard and stressful, mind you, but it's also been an incredible experience to see this part of society and how it functions. I'm learning that medicine, as I've heard many times before, is not an exact science. And doctors, even surgeons, can have and express emotions that can really bring down the barriers between that doctor patient line. You realize they are human and not a computerized robot that has all the answers.
Many are parents, too, and working with children, they sometimes have to put themselves in the "parents shoes" to understand and act upon those deep running emotions. All I can say is, "Thank you God for creating such amazing people!" We're getting ready for some visitors here shortly, so I'd better sign off for now.
I forgot to mention that Sicily has lost both her IV's in her arms and her catheter has been removed. Each lost tube and wire is a step closer to recovery in my book. The nurse said her bowels sound like they are moving...so keep praying.
It was my turn on the rack last night. Sicily slept fairly well. Team Doctor (about 7 of them) stopped by for their usual 6 am visit. Dr. Poopang (sp?) said Sicily needed to get up and start the bowels moving. They continue to be moderately concerned with the heart rate being above the normal range.
Near disaster struck about 7:30 am. I heard a strange sucking sound and realized Sicily's NGTube was barely hanging in her nose. Somehow the tape holding it to her face had come off and allowed the tube to start coming out. The nurse was able to guide it back down and resecure it but Sicily wasn't too happy with that episode.
Other than that, it was a quiet night and early morning. Peace to you all. Patrick
We've had a pretty uneventful afternoon. Except for just now...mommy and daddy took Sicily for a walk and when we were lifting her back into bed, her accessed port just fell out. So we are waiting for the Emla cream to take affect and numb her skin before they re-access her port.
Her port is very, very important. It's how she is receiving all her fluids, antibiotics and pain killers. Sort of her life line.
This was our first walk down the hall since the second surgery. She did pretty good. She is not in the best of spirits, but who would be after all she has been through. It takes two of us to walk her as her IV tower, tree, or ball and chain...what ever you want to call that thing is the size of a double wide trailer. It's quite a monster. But we manage.
We pretty much are expecting to be in the hospital for quite some time...the doctors hope she can start taking in fluids by Sunday. Considering this is only Wednesday, that sounds so far away.
I will be traveling to Wellington Tuesday evening for a benefit in Sicily's honor that the high school Honor Society is having. Our old babysitter, Katie McComb, called us several weeks ago to tell us what they were doing. I was afraid I wouldn't be able to make it, but I'm going to do my best. I think it is so sweet and special. I'll be ready for a break from this environment for a little bit. I need to see some old faces in friendly places!
Sicily and daddy are blowing bubbles right now and we're "discussing" who gets to stay the night tonight. It's actually my turn but daddy says he is staying and Sicily says daddy is staying...maybe we'll both end up staying.
Sicily's heart rate is still higher than what the doctors want to see, but there really isn't an explanation as to what is causing it. We're all just keeping an eye on it. And still no movement from the bowel area even though they say they can hear them moving.
Everyone have a good evening. We'll try to do the same.
We're doing good. Patrick and I both stayed last night, and we would've had a decent nights rest if the 'ole vitals monitor didn't keep ringing. It's a very temperamental machine!
Speaking of temperamental, Sicily is really grumpy this morning and somewhat difficult to be around...Patrick and I just have to look at each other and smile and think, "This, too, shall pass!"
She is blowing bubbles with daddy right now and we are getting ready to take a walk here shortly. We're really working hard at being patient with the recovery this time.
It's just so scary to think that she could have problems with her bowels again, so are main prayer request right now is for her bowels to behave themselves and not cause another problem.
I'm going to let you all in on a little secret...we were told today that we may have a special visitor...I won't say who, but will let you know if it happens!
Well, better get to moving. Patrick and I work like a well oiled machine when it comes to unhooking all the cords, wires and gadgets needed to get Sicily out of bed for a walk. We could always call a nurse for help, but we've learned how to do it ourselves. Makes us feel useful! Everyone have a great day and keep the prayers rolling!
ANOTHER UPDATE FOR SICILY
THURSDAY, DECEMBER 04, 2008 01:28 PM, CST
Afternoon...second posting for today. We've already had one little surprise today...nobody told us that an ultrasound had been ordered until a man came with a wheelchair to take Sicily downstairs. It's quite a production to get all her "baggage" to tote along with us. Fortunately, this guy new what he was doing and got us down to where we needed to be without any problems.
It took a long time to do the ultrasound as they were being very thorough. They didn't see any problems, but didn't completely rule out that an intercession (sp?) couldn't happen again. We just wait, watch and see...as with everything else.
Walking through the halls of the hospital, especially when we were downstairs, we still attract the looks from many who give us a tight lipped grin as if to say, "Poor thing!" I catch myself returning that same grin as if to say, "Yes, we know!" But I've also started a habit of not even making eye contact with others as if to avoid the en evitable pity stares. I know nothing is meant by it, but sometimes I still need to get past the pity I feel myself, so avoiding what is directed towards us is the only thing I can do. It's human nature.
I'm guilty of slightly taking a peek in patients rooms as we take a walk around the ninth floor surgery recovery. When I see young parents with a little newborn baby, my heart sinks. We're all going through our own different trials, but we're all parents who love their little people more than life itself.
Isabella and Elias' elementary school is having a toy drive with the Children's Hospital in Tulsa being the recipient. One of Isabella's teachers, Ms. Jones, sent out an email and asked those who wanted to participate in the drive, to think about what their own child would want if it was they who were in the hospital over the holidays. That struck such a note with me...Sicily has been a recipient to a strangers generosity due to a toy drive that occurred some time, some place.
A hospital volunteer came to visit her room shortly after her first surgery with a cart overloaded with toys. She explained that every child who is admitted into this hospital is given a toy. And Sicily's cousin, Jordan, helped her pick out an adorable little baby doll with eyes adorned with curly eyelashes and a little bottle to feed her with. It was a very nice toy, not a cheap one, by any means.
I made the decision that whenever I buy another toy for a donation, I will buy something very, very special...that's one way I can pay it forward for what has been done for and given to us! It's amazing what such a small effort can achieve. What a blessing!
Well, Patrick and Sicily are taking little catnaps. Still don't know if we'll get our visitor today, but I'll post either way later on! Don't you just love suspense?!
Glad to hear that things are looking up for Sicily. My son was in the hospital on Christmas. During the night a nurse came in and brought him some gifts that people had donated. It meant a lot that strangers thought about kids in the hospital. He is now 20 and still has the stuffed toy and Christmas tree. Thanks to all you for keeping my family in your prayers. I still have not told my son about the fracture in the titanium rod in his back. I just can't do it now. These are the last two weeks of the semester. He has finals etc.
Hugs to all
Hugs to all
So far, so good today. Sicily's ng tube has been without suction (clamped) for quite some time. Actually longer than what was planned as it seems the little pump controlling the suction didn't work during the night. She's done well and has not complained of pain or nausea, so we are optimistically hopeful.
She and daddy are headed out the door for another walk. Anything to stimulate her bowels...she did have a very small movement this morning...we're still waiting for something more substantial. We're hoping for popsicles later on. The doctors are busy in surgery so it may be awhile.
I'm heading back to Broken Arrow this afternoon so I can bring back our other kiddos in the morning so they can spend time with their little sis. It feels strange to have not seen them in five days, but when I talked to Corinthian on the phone the other evening and asked him how things are going, he replied, "fantastic!" Another blessing in a long line of blessings we've learned to be thankful for during such a difficult time...our other three kids have been able to spend quality time with many different family members and they have been made to feel very special.
We are attending a Christmas party this Sunday afternoon sponsored by the OCCA (Oklahoma Childrens Cancer Association). It's such a sweet thing. Santa Claus will be there and presents will be given to the cancer patients as well as their siblings. They had me fill out a simple wish list for each child. Makes the sisters and brothers feel just as special as the patient. We'll be wheeling Sicily over to the party, along with her double wide trailer.
It's beginning to feel a lot like Christmas! Especially looks like Christmas in our hospital room. It's funny how word gets out about a "pink Christmas tree!" We've had several extra visitors, nurses mainly. I think it puts a smile on everyone's face who sees it!
We are watching our own 24 hour marathon of "The Christmas Story"...per Sicily's request. I brought the DVD with me, and no, I'm not sorry I did. Right now I love anything "Christmassy" and this movie has always made me laugh...even on the 200th viewing!
Well, we're waiting for "team doctor" as Patrick refers to the group of surgeon fellows and medical students who pay us a visit twice a day. Maybe they can get the popsicles scooted our way. Sicily is now relaxing on the fold out couch/bed. She'll probably not spend another second in her hospital bed now that she has migrated over this way. One more step to normalcy!
I'm going to be heading out soon, so I'll journal later if we hear anything more. Everyone have a nice Friday evening!
I spoke with Patrick a bit this morning and he reported that Sicily has been making those long awaited "sounds," finally, but has started coughing and bringing up a little gunk. Sounds like it's related to her cough and not her stomach so the doctor's are writing the order to pull the ng tube and start her on liquids today. Let's pray everything goes like clock work. We're due for something to happen as it's supposed to.
I'm in Broken Arrow with the other kiddos and we had planned on being back in OKC by now, but we had a little incident last night...our beloved kitty, Stowie, went missing. I think I could audition for the next "Ace Ventura, Pet Detective!" After much stress, searching and tears, we found her...in our attic. Apparently, Corinthian had gone into the attic, which his closet has direct access to through a door, to briefly look for something, even though we have told all the kids it is OFF LIMITS. Stowie must have slipped in behind him without him seeing her. We searched inside and out and were pretty much in despair. I couldn't fathom having to tell Sicily that the little kitty she loves so much, her motivation to come home, was gone.
I knew I wasn't going to be able to sleep unless I figured out what had happened to her, so I kept returning to the attic and I noticed what looked like little paw prints going along the top of the air duct tubing. But that ended in about twelve feet of blown insulation. I had Corinthian get me a yard stick as I tried to balance on the two by fours and started to search through the eighteen inches of white fluff...nothing. I continued search outside in the cold but kept returning to the attic as that had to be the only place she could be. My fear was that she could have fallen down between walls or something and was stuck. I was close to giving up when a little head appeared way far in the back of the attic where there was only sheet rock and no insulation. I yelled, "I found her and she's alive," as we were expecting the worst!
I could tell Stowie wasn't going to try to jump as I think she had previously fell into the white abise...Valerie and Ethel had reported hearing a loud thump over the kitchen earlier. Corinthian and I ran to the garage and brought up some flattened moving boxes and laid them out for her to walk across. She was very skiddish and cautious, but as soon as she got close enough to me, I grabbed her by the tail. Kitty rescued...lesson learned...NOBODY goes into the attic!!! Especially the kitty!!!
Disaster was avoided and I went and crawled into the bathtub after that! I'm now working on the laundry I had planned to get done last night instead of putting my detective skills to work. All those years of watching Law and Order paid off! I'm pretty proud of myself, I have to say.
So, we are going to be delayed in returning to OKC, but that's okay. I'll post more later on if Sicily gets to start her new diet. Thanks for all the prayers...we feel them!
We had a pretty rough evening yesterday. Sicily's ng tube was pulled yesterday morning and she began to throw up again. By about 5:00, they decided to do another CT scan to check and make sure she was not having another intercceseption (sp?) with her bowels.
Our problem was that she had to drink the red contrast, about 8 to 10 ounces in a couple hours time before the scan. She kept throwing up and we had no way to know how much she had actually kept down. Finally, by about 9:30 they decided the only thing to do was re-insert another ng tube so they could get the contrast directly into her stomach. That was a very unpleasant experience...holding down our daughter so a tube could be forced into her nose and down her throat.
Her nurse said she hates doing this procedure...it's like giving shots, she knows it's painful and scary. But we were successful and we're down in CT by about 10:30pm. The radiology resident reported back to us around 11:30 and said that everything pretty much looked okay, nothing outside of normal surgical recovery. That rested our minds a little, but there was still the underlying issue as to why she kept throwing up.
Patrick and I both stayed the night as we anticipated the worst, but were pleasantly surprised when Sicily only woke once to use the bathroom. We did keep the suction on her tube all night as to remove the remaining contrast in her stomach, but other than that, nothing else came up.
The doctors have discontinued her antibiotics since she is far enough out from surgery and that could be a contributing factor to her nausea. Zofran has not worked and they are not going to give her Phenegren (sp?) anymore. One of the surgery fellows was just in and said we will go ahead and pull the ng tube again, and may even let Sicily have a cracker along with her other liquids. I'm keeping her away from water as I feel that letting her drink just water on an empty stomach can also cause nausea, so we have a barrage of different things to try to coerce her to consume. Wish us luck.
She is definitely acting a lot like the Sicily we are used to...she is still very grumpy and bossy...but we are continuing to be patient with her. We are still going to attempt to attend the Children's Christmas party this afternoon, then Patrick will head back to Broken Arrow with the other three kids. I will stay and continue to get her to drink and eat. Bless you all for your support!
Today actually felt like we were starting to move forward. Sicily has been doing pretty good. She's been drinking a little water and keeping it down. And her bowels are singing. Who would have ever thought two simple little things could provide such happiness?
She still has no desire to eat anything, but tomorrow is a new day and I'm going hope she starts to regain her appetite. They weighed her this evening and she weighs over 38 pounds...more than she did coming in. And she hasn't had a bite to eat.
Her little body has been sustained on a bag of yellow fluid, called a TPN and a white bag of fat emulsion...yum, yum. We tell her they're her lemonade and milk. I don't think she buys it. She's allowed to eat anything solid right now, but I think she is scared...there is a mental issue about eating and throwing up, so it could take awhile.
We did manage to go to the Christmas party this afternoon as a family for a bit. We were limited on time with the IV pump running on battery power. Sicily was overwhelmed, I think, by the number of people, and didn't care to eat any pizza, pop or cookies...something she usually likes!
She has cried a bit this evening about missing Stowie and wanting to go home, but when I bring up that all she has to do to get home is start eating, she changes her mind and says she doesn't want to go home. I wonder if she even remembers what home is? Nineteen days in the hospital could probably weaken a three year olds memory.
I brought little photo albums with me to remind her of home and our family. She enjoyed looking through them tonight. I was just hoping it would spark a desire to return to our life we have created there. Unfortunately, time will only tell. And I feel like time is wasting away as each day passes in here. We watch other patients and families come and go, yet we are starting to feel like a permanent fixture. The nurses make it all worthwhile, though. I still can't say enough about how wonderful they are. I will surely miss them if we ever get our walking papers!
Well, Sicily is getting sleepy, so when she starts to go down, so do I so I can hopefully get a little sleep here and there. Pray we can head east one of these days!
Doctors are having difficulty solving some things for Sicily. Thank you for your prayers.
MONDAY, DECEMBER 08, 2008 01:30 PM, CST
I wish I could report that things have changed, but there really hasn't been much since last night. We had a decent night, only real complaint is her little cough that kept her up a bit, but all and all, we did okay.
I have come to the conclusion that our daughter is a walking medical mystery. Shall we examine the facts? Right now, Sicily seems fine, acts fine, doesn't complain of any sort of pain, yet one of her pancreatic enzymes is, as the GI doctor put it, at an impressive level...and I don't think she is being complimentary when she said it.
This would typically indicate a case of pancreatitis. But upon a physical examination, Sicily is experiencing no pain when her abdomen is gently pushed on. She's not throwing up the water, gatorade, green popsicle or three bites of jello I've been able to get in her.
By the way, I'm laughing at the thought of Sicily even considering consuming the food and beverages that have been brought to her room...she doesn't consume most of these things on a good day at home. There is little chance of me getting her to eat and getting out of here if it's all based on the contents of the tray that sits untouched before me. But that's a whole other chapter.
The doctors are a little stumped with the current mystery. But again, I remind them that she appears to be the exception to the rules when it comes to medical issues. I'm still trying to figure out how Sicily's right kidney came back with an unfavorable histology when we had a substantial shrinkage with the first six week round of chemo.
We were told that kidneys with anaplasia don't usually (usually!!!) respond well to chemo, and we were on a somewhat mild protocol, mild that is, compared to others. Her little body did some surprising (not good surprising) things during the first surgical recovery, and now still continues to baffle the experts.
I've cried a lot this morning, out of desperation, but I am doing better. Again, my favorite people in the world right now, the nurses, are always here and I am forever thankful. We had a couple of wonderful nurses over the weekend, Terri during the day and Megan at night that we felt would do anything for us. They are so amazing. Today our nurse is Debbie, and she hugged me and held me this morning when she came into the room and found me crying. She's been so supportive!
We are now waiting to hear if we will go through with a couple of tests the GI doctor recommended they might want to try. It's up to our surgeon on what to do next. Patrick and I discussed if this is a "sit around and watch" type of scenario, we might try to get transferred to the St. Francis Children's Hospital in Tulsa just so we can be closer to home and our other three children, who need a bit of normalcy returned, even if just a small bit.
It would make things a little easier, but it still woudn't be the same as going home. Having spent twenty days inpatient in the hospital and having no idea how much longer we will have to be here has definitely worn me down. But looking into my beautiful daughters eyes and seeing her actually smile and tell me she loves me today rebuilds my resolve and allows me to continue on. I would still do much better if I could sleep in my own bed, bathe in my own bathroom and cook my own meals! Hopefully soon!