Today's appointments went well. Shelby enjoyed her time talking to her Dr. Jill then we decided to fill our 3-hour gap between appointments by going to the Peggy Notebaert Nature Museum. It was a lot of fun there and totally beat hanging out at the hospital. Avery was totally psyched to hang out in the butterfly haven; Shelby not so much. Shelby not at all, in fact. When the really huge butterfly landed on Avery's head and then proceeded to hang out on Shelby's backpack, she decided she'd had enough. Hopefully my Mom got some great shots of the amazing butterflies and Avery enjoying herself.
My time talking with Dr. Superina was fine; very reassuring to me....other than him running over an hour late! Shelby's "rash" decided it would flare up in clinic so the NP and Dr. Superina were able to see it. He would like her to see her Dermatologist (of course, in Chicago) next week (:-O) He said he would get in touch with the Dermatologist about her seeing Shelby and we weren't on the road more than 30 minutes and I got a phone call from her office asking all sorts of questions and wanting me to e-mail the pics I've taken of her skin. No word yet on the cultures taken last evening.
Dr. Superina said Shelby's MRI looked fine and that all was a go for the 13th. He said he will not be able to use her Kasai incision because she has grown so much since then and it is now up high by her ribs. He will have to create a new incision, but hopes that that one can be used again when she has her transplant. It appears that the incision will be 4-5 inches long. She will not be able to do any activity, like gym, for 6 weeks so she has quite a recovery time ahead of her. He said that her spleen should go down in size as soon as during the first week post-op! The platelets and blood cells, however, will take longer to show improvement.
Now, its just time for this to happen. Only 13 days to go...I totally trust this man with my little girl. Just to remind him of what an amazing kid Shelby is and what a precious gift of mine I am placing in his hands, I showed him this (we each made a feather for a "Thankful Turkey" on Thanksgiving) ~
~ in case you can't read her writing it says: Shelby - I'm thankful for Dr. Superina, my surgery, sisters, Disney channel, Santa! and the best Christmas presant which is Kayla coming..and everything!
Right now I have Shelby beside me saying that her tummy hurts so bad she can't go to sleep. There is nothing I can do for her; nothing. We've tried so many things and she's maxed out on the meds she can take for it. I pray that somehow this surgery helps her tummy pain, too. We would appreciate your continued prayers. Thanks.
For those of you who are not on Facebook, I am sorry. I said I was going to update here more, but the past few days I've fallen back to FB. I didn't think there was that much to update so I did short ones on there....but that seems to have turned into a 3-day saga that has not ended yet. Saturday afternoon I noticed a clear fluid-filled blister on the inner edge of Shelby's right eyebrow. Very concerned that this little blister, showing up out-of-the-blue, could lead to a repeat of this, I called the on-call GI here in Rockford. She ordered labs so we could see what Shelby's little body was doing. They looked o.k. so we were told to just watch her. No fever and she slept well that night so I thought when she woke up Sunday morning all was going to be well. Wrong...
She woke with what looked like a scab where the blister was and this really red "rash" under that eye. The on-call GI was called again and she wanted Shelby to get looked at at Immediate Care. We spent a good 2 hours there Sunday afternoon only to be diagnosed with impetigo and sent home on Cleocin. In the 1 1/2 hours between dropping her off at home and finally getting home from the pharmacy with the filled script, her rash had doubled to what you see in the pics.
Again, we called the on-call GI and she thought it would be best if we headed to the ER to be admitted for overnight observation. We spent 5 hours in the ER only for it to be decided that it definitely was NOT impetigo, nor anything infectious, and that Shelby did not need to be admitted. I reminded them of March 2009 and said "Ok," but still did not feel right about things. Shelby and I arrived home after midnight and quickly fell asleep.
She did not wake until after 11:30 this morning and I was happy to see that the redness had faded quite a bit, but very frustrated to see that she had developed 2 new small blisters on the other eye's inner eyebrow plus the original blister had filled with some fluid again! I put a call into our GI because they had already called this morning checking on her and relayed what I saw. I also added that Shelby had been having "unusual" BM's for the past 4 days. They ordered stool cultures and wanted us to see our Pediatrician to have the blisters cultured and Shelby was to re-start the antibiotic that she received from the Immediate Care doctor yesterday. I was very disappointed to find that our Pediatrician was out sick today and her partner was not in. So...that meant, back to Immediate Care! ARGH!!! Shortly after they opened at 5 p.m. we got there only to wait about an hour to be seen. Once the doctor came in and looked at her he said "there is no fluid. I cannot culture this." I explained to him that the blisters had "waxed and waned" throughout the course of the day. He then proceeded, with pictures, to try to tell me what a blister was. I then lost it and explained to him (again) her history and that, yes, I knew quite well what a blister was. At that point he asked - although I had already told him - who wanted us to come in. I told him our GI and he proceeded to scoot out of the room before I blew up any more. He came back in the room singing a different tune and said the GI did want the blisters cultured, even if he felt there was no fluid at the current time to get out of them. Swabs were taken; he said he understood our medical worries and told me a family story involving (his?) child who had medical issues and all the time they spent in the hospital and walked us out telling us that God was with us. I hate it that I had to get so insistant, but, as I told Shelby, this Mama Bear will do anything for her Baby Bears. Anything. Even if that means yelling at a doctor. Sigh. So now we wait and pray that nothing yucky comes back on her cultures AND that she does not wake with anything "new."
Tomorrow, we go to talk with the surgeon about her MRI results and surgery. I pray that her surgery is not delayed because of this skin "stuff." Shelby also gets to see her Dr. Jill who I am sure she'll have an earful for. Especially after seeing Mama Bear get so fired up tonight.
In 2 weeks, Scott and I will be sitting in the PICU next to our sweet Shelby. I pray that she may have very little pain, good pain management, skilled doctors and nurses, patient parents and a speedy recovery.
Thank you Christ UMC. Thank you. All this plus a 22-lb turkey (and other stuff already in put in our freezer) was delivered to us yesterday. We were not the only family to be recipients of such a generous gift. Christ UMC delivered many of these "baskets" to many families in our area. Yes, right now is tough; its stressful; I'm not able to put in many hours working and that puts a strain on things financially. This is a most welcomed gift. I don't feel its charity or giving to us "poor." I feel its a gift of love; of others taking care of others. Riley struggled a bit seeing all this here at our house when she is fully aware that her school is collecting canned goods & non-perishables for the Salvation Army's food drive. She questioned why we were getting all this. Was something wrong? I told her its others showing their love towards us. Love one another. Plain and simple. May you all have a blessed Thanksgiving.
John 15:9-17
“As the Father has loved me, so have I loved you. Now remain in my love. If you keep my commands, you will remain in my love, just as I have kept my Father’s commands and remain in his love. I have told you this so that my joy may be in you and that your joy may be complete. My command is this: Love each other as I have loved you. Greater love has no one than this: to lay down one’s life for one’s friends. You are my friends if you do what I command. I no longer call you servants, because servants do not know their master’s business. Instead, I have called you friends, for everything that I learned from my Father I have made known to you. You did not choose me, but I chose you and appointed you so that you might go and bear fruit—fruit that will last—and so that whatever you ask in my name the Father will give you. This is my command: Love each other.
4:57 p.m.
Today has been full of wonderful visits! Early this afternoon we had Carolyn, Tara & Stuart Glenny visit for a few hours. Carolyn & Tara helped Shelby make a doll. Then, Grammie & her sisters came. We worked on a Thanksgiving craft and enjoyed hugging eachother. Now, her BFF, Kayla, who moved to Atlanta this summer, is here. She came back to Rockford to visit her grandparents for Thanksgiving and was able to come up to the hospital tonight. This is GREAT medicine for my Shelby.
Please say a prayer for Scott. What a heavy load he is carrying! Clinicals, classes, working nights...its taking a toll on him.
11:10 a.m.
Night went fine or should I say morning. Shelby finally fell asleep at 3:30 a.m. with her hand in a bag of goldfish crackers! Today's labs are about the same; slightly improved (?), I think. Her ANC is down a bit which makes her neutropenic, but it is closer to her "normal." No sign of the fever - yea! Now we just bide our time and wait on the blood cultures. Of course, Shelby thinks its time to live it up! She has plans already to decorate her hospital room and is waiting (impatiently) on Child Life (like she's the only patient). I love her so much! Keep on swimmin, swimmin, swimmin, my little Dory!
10:21 p.m.
Did I really know deep in my gut this morning that something was up with Shelby? She and Avery stayed the night at my parent's house because Riley was having a slumber party. On the way to work this morning I called my Mom to see how their night went. She said Shelby woke up around 7 (her usual, no matter how late she stays up), but fell back asleep on the couch. I thought that was quite strange...anyway, my Mom said she woke up just fine and was acting normal. After work I went to pick them up and stayed a while watching videos of when Shelby was born. Around 4:30 we headed out and Shelby had started complaining shortly before then that she wasn't feeling well. Avery was wwaayyyyy over-tired and fell asleep within minutes of leaving. Shelby continued to feel worse at home and started to develop a fever around 6:30. I put a call into Dr. Deutsch (her GI - thank goodness he's on call this weekend) and he said wait to see if her temp hits 101 then head to the ER. Two hours later her temp was up to 100.8 and she was crying about her tummy pain. Time to head in, I decided. So, I called up my Saint of a Mother (who only and finally had a few hours kid-free) to have her come over to stay with Riley and Avery. Avery just woke up from a nap that was from 4:30-8 - NOT good. Sorry Mom! I was hoping she'd sleep through the night! Scott is here at the hospital working tonight. So, the ER doctor who first took care of her when she was only 5 months old, has been in to see her; urine has been collected; Emla cream is numbing up potential IV sites and we sit and wait in an all-too-familiar place. It doesn't even phase my crappy feeling kid that she is in the Emergency Room. She's sitting there playing her DS and eating ice chips. I wish I could act that good when I don't feel well. What a trooper! What a great attitude to make the best lemonade of the lemons that have been handed to her. Gotta love her. Most likely, this will lead to a minimum of a 48-hour admission on IV antibiotics while we wait on blood cultures, but....I'd love to be wrong. To be continued.....
12:35 a.m.
Being admitted. High bands and low lymphocytes (parts of the white blood cell count), chills, fever (which is gone now)...looks like an infection. She will be put on IV Zosyn until we hear on blood cultures. That could take as long as 48 hours. Prayers please.
BUT, Shelby's MRI ended up taking 2 1/2 hours! I don't know what all the confusion was exactly, but something like they needed more views to get what Dr. Superina wanted and she had to be intubated b/c she was asleep and you can't ask a sleeping person to hold their breath for certain shots, now can you?!? Anyway, when we finally got to see her about 3 p.m. (after pacing the hall right outside the room) and she was OUT. Once she finally woke up, the first thing she said in her little scratchy voice was "I'm hungry." That's our girl!! Her throat is very sore from being intubated :-(
We were supposed to have our appointment with the surgeon at 1 p.m., but because of everything running behind and Shelby's test taking so long, we weren't able to see him at all. Now we have to reschedule! ARGH! Very frustrating! Scott skipped classes to be there yesterday, not only because Shelby was getting anesthesia, but also so he could be there to ask questions and talk to the surgeon. Now that 's not going to happen.
Since it was rush-hour time when she was discharged, we threw her in a wheelchair and headed to her favorite restaurant in Lincoln Park, Bacino's, for some supper. She ate pretty good, but also was very tired. We got home sometime after 8 p.m. and all 5 of us crawled into bed together. That made the day all better for this Mama. :-)
We saw Shelby's GI here in Rockford last Monday for her tummy pain. He thinks it is her functional pain and is not surprised that it "flared up" a week after her learning that she was going to have surgery. Makes sense to me. He put her on peppermint oil for her tummy aches and suggested that we avoid things like sugar-free gum to help minimize her discomfort. She has been doing better,tummy-wise. Scott and I did notice, though, that her HE symptoms were back. A level was run and her ammonia is up a bit to 83. Her med for that has been increased a bit and we'll re-check it again in 2 weeks. Shelby is now on 33 doses of 15 meds a day!!!
We are busy working on making arrangements for Riley and Avery while we are in Chicago with Shelby during her surgery. Scott is doing awesome in nursing school and I go to see the Nephrologist next week to see if he has figured out my potassium "issues." That's all for now.
