A Good Substitute for Therapy

The Finished Product

She kept standing like this and saying cheese so I guess she wanted me to get a shot of this pose

The Master Decorator

The Beginning of the Cookies

I should *so* be going to bed but I have not been to my therapist in weeks due to scheduling conflicts so this is my next best therapy. After the night in the ER with Anna she pretty much got well quickly. It sucked that she was sick but I didn't really mind that the fever made her tired. I know, that is not a good mommy thing to say. The best news of all- she is tolerating her feedings. (That is a lie, the best news would be that she is sleeping all night so maybe it is the second best news) We have been going up nightly and she is now getting 100ml over an hour every 4 hours throughout the night. I somehow feel that by typing that I am sure to be puked on by morning but oh well. I did forget to turn the pump off the other morning though when I unhooked her and returned to my bedroom later to find a nice 60 ml river of tube feeds in the bed. We did laundry and the next night Anna pulled the feeding set out of her button during the night and so we repeated the river and the laundry. Our sheets are now likely cleaner than they have ever been. Her formula is 1.5 cal/ml so that is an extra 450 calories a day which is HUGE. That puts us at about 700-800 calories a day now. I talked to the dietitian who said she needs 1300 cal/day so we are getting there. We will continue going up on the feeds until she doesn't tolerate it. The dietitian said it is weird that she tolerates the boluses and not the continuous and that it is usually the other way around. I told her that Anna does everything backwards. The dietitian said that if she vomits again we could try Nestle Compleat (yes, that is how you spell it) formula. It is chicken and peas and cranberry juice ground up into tube feeding. How nasty is that I ask you? I know she doesn't have to taste it but still, there is just something wrong about that. I looked into it but it has a milk component too so it will not work for Anna. I think it is less about the formula and more about the reflux anyway. I am over being irritated at the GI clinic. I have discovered their main malfunction and have been assured that it will be fixed in February when ALL of Cook Children's records are electronic. Carly is out of school all week for Thanksgiving. I am trying to do some special things with her this week. Tonight she helped me cook dinner and then we made cookies and had movie night. She chose 101 Dalmatians but then was scared throughout most of it. She got special time with me though and that is really what mattered. I can't believe that about 2 months ago she wouldn't eat beef and now she is helping me cook it. She was so proud of her cookies and couldn't wait to call her daddy at work and tell him the cookies would be waiting for him when he comes home from the station in the morning. She just keeps saying to me in the sweetest voice, "Mommy, I love you." I wonder sometimes what I have done to deserve such love from her, she is so sweet. I had an experience today at lunch that I am sure will just be the first of many but it was so sad anyway. I took the kids to eat lunch at Arby's and let them play on the playground. There was this snooty mother there with her 4 children. I heard her tell her kids not to play with Anna after seeing Anna's Gbutton through her onesie. She then added that Anna might bite them. I was disgusted that an adult would do this and sad for her children that this is what their mother is teaching them. It hurt my feelings but then I got a chuckle because I know as Anna gets older and hears these things she is the kind of kid who will just go over and knock the crap out of them. She is tough. It isn't that I condone her knocking the crap out of someone but if I have to chose between people's ignorance or my daughter showing them who is boss, well, then, my money is on my daughter. On a totally separate note I heard an earth shaking sermon Sunday on forgiveness and am determined to work on it. I am usually a very forgiving person but there is one person who I just have an emotional choke hold on and I can't seem to let go. It has everything to do with Anna. I have to learn to forgive him. It isn't because he deserves it, it is because it is what I am commanded to do. I did not deserve the forgiveness I got from God but he sacrificed his Son anyway. This sermon came at a divine time. I say that not so much because I have never needed to forgive before because Lord knows I have needed to but because events this past week have really made me look deeper into this subject than I might have otherwise. On Friday I received word that we will be signing a contract with Mueller and Hillin Law Firm out of Austin to likely represent us in a malpractice suit. Then I heard the sermon Sunday and began really questioning if pursuing the case is in line with forgiveness. I have thought and prayed and read and where I am right now is here...I try to think of the love my heavenly father has for me like the love I have for my children. When they are wrong, I forgive them but even after that forgiveness they must pay the consequences for whatever they have done. So today I do not think that forgiveness excludes consequnces. I am having a really hard time putting all of this into words so I hope it makes sense. If you understand what I am saying what do you think?

Dear Santa

My sister bought Anna this onesie last year. It still fits and so does the messsage.

No Rest For The Weary

I thought about just pulling my hair out but if you have ever seen me you know how long that would take and I just don't have that much time. Anna has had a fever of 104 since Sunday. It goes down with Tylenol and Motrin but comes right back up. I took her to the pediatrician yesterday and he was great and said we would wait it out a couple of days and if it wasn't better Anna would need a work up. She has no other symptoms, just a fever. Her flu screen was negative but we again were just hoping for some virus. Yeah, I know, I'm crazy- hoping for a virus. He called and checked on us today and things were about the same so we decided to wait until tomorrow and see where we stood. As our luck would have it her fever went up to 105 this afternoon and she was breathing funny. I talked to the Dr's office and decided it was best to take her to the ER. I was there for 5 1/2 hours. Guess what we know now- she has a fever of unknown origin. Her white count is up so there is infection somewhere but her chest xray is clear and her urine is clear. Those would be the 2 most likely places for her to have an infection. She had blood cultures drawn but they take a few days to incubate and even if they were positive that infection would have to originate somewhere. I am afraid it may be her Gbutton. She got a shot of Rocephin (ouch!) and we are to follow up with the pediatrician tomorrow. Although the ER took forever everyone was great except for the triage nurse. This is at the hospital where I work so I will have no problem taking care of it. She was rude and treated me like an idiot. I not so politely reminded her that I work in ICU and am not easily rattled but that my kid is really sick and that there was really no need to treat me like an idiot. Her response was that "your daughter looks fine to me." I will be happy to provide her with a copy of Anna's labs and remind her that being presumptuous is not really a quality one should strive to have. It sure would suck after a long hard 12 hour ER shift to find one's tires flat don't ya think (OK, so I can dream right). And then there was the GI's office. They called to let me know that after looking at the results of Anna's upper GI the Dr would like to start her on Prevacid and Reglan. Uh, the problems with this are 1. Anna is already on Prevacid and has been forever and 2. I have told them a million times before that unless there is no other option I really do not want to use Reglan. Yeah, well, the Dr is doing procedures all day so he won't be able to get back with me until at least tomorrow. I know we are only 1 of 1 million patients but isn't that all the more reason a Dr should be looking at the chart before deciding what to do with a patient? I am not trying to be a pain, I just want somebody to pay attention to what they are doing. If they would get it right the first time I would quit calling back and we would all be a lot happier! Tomorrow I get to go eat Thanksgiving lunch at school with Carly. She is so excited. I am excited to see her and watch how she interacts with others at school. As for eating a school cafeteria holiday lunch, not so much...

Down and Out

OK, so apparently there are too many acronyms in my life. Today was not an EGD for Anna, it was an Upper GI. I am sleep deprived and can't keep it straight anymore. The results were sort of what I had expected but then also not what I expected. The upper GI consists of giving the kid barium (Anna's went through her button so that was easy) and watching it under flouroscopy which is kind of like a constant xray. When the radiologist first turned the flouro on she was asking when the last time Anna ate was. I told her it was around midnight. Apparently Anna still had food in her stomach from dinner last night. The barium cleared easily but it appears she is not digesting food appropriately. I expected that since the ralph sessions always included the previous night's cuisine. The next finding was odd. If you will recall Anna had a pH probe done not too long ago. It did not really show any reflux and it is the definitive test for reflux. She did have some esophagitis which meant she has a little reflux but it did not appear to be that severe. Anyway, when the tech pushed the barium in it shot all the way up her esophagus into her mouth and stayed there in the esophagus for the remainder of the test. So, the minor reflux turns out to be major reflux. Anna is already on Prevacid so that should actually stop the reflux but obviously is not working. I found this news upsetting because if we had known she had reflux we likely would have gone ahead and had the Nissen fundoplication done while having the g button placed because the 2 are usually done together. Since the pH probe did not show any reflux nobody thought she needed the Nissen. Now she will probably need the Nissen but will have to have yet another surgery. I feel horrible for Anna and it is stressing me out. This has not been a good day for me. I am frustrated and feeling hopeless but I know that all stems from my exhaustion. I am averaging 3-4 hours of sleep a night and working full time. I feel like I do not know how much longer I can go on like this but also know there is no choice. I had really put all of my faith in the G button that it was going to be the answer to the sleep problems. Now that things are not any better I just do not know where to go from here. It isn't that the button won't be the solution long term but we have to get all of the kinks worked out first and I just don't know how long that will take. She is tolerating 30 ml every 4 hours but that comes out to about 4.5 oz every night which is not enough to make a difference. Most days I feel like this CP is tolerable and doable but today I am reminded that how things are today is probably how they will always be. There will likely always be something medically going on with Anna and there will be few times when we can truly just sit back and relax. The truth is that there will always be Dr.s appointments and this and that. Today I hate this terrible palsy. Sometimes I can deal with it. Today- not so much. I had a breakdown earlier today and luckily Christy came and took the kids so Kenneth and I could get out for a bit and I could calm down and get myself back together. I hate when I breakdown. Again I thank God that he placed Christy in our lives. I think I hear a pause in Kenneth's snoring so I best try to go lay back down and go back to sleep. Wish me luck...

Her Abnormal Normal

First off I want to thank all of the veterans who are responsible for the fact that we are free. I also would like thank the families of those past and present serving in the military because they make a huge sacrifice as well. As my brother in law leaves in December to go to Iraq I see again that not only does the soldier sacrifice a lot, but so does his wife, his children, his mother, his father, his siblings... So again, thank you!!

Now back to the regularly scheduled broadcast... I called Dr. O's office on Monday and reported the continued vomiting. I received a call back from with a new plan. We are to feed Anna 30 ml over an hour and then stop it for 4 hours. That (for all of us non metric people) is 1.5 oz over an hour. We do this throughout the day. She has done well with it for 2 days now so I may be brave and try to do it through the night tonight also. The second part of the plan is that Anna will have yet another EGD this Friday. Luckily this time they will just go through her button so she will not have to be intubated again. I am happy about the no intubation part! Seriously, 4 intubations before the age of 2 is just not right. I do not really know what Dr. O will be looking for with the scope. When I called I was just really hoping for some Erythromycin or something to promote gastric motility. I do not want to use Reglan on Anna but will if that is what Dr. O wants to do. I have gone over and over in my head wondering if this is the right thing- to do another procedure. What I keep coming back to is this: Dr. O is the best in this part of the country. I have to trust him. I have to believe that he is doing the right thing. It would be foolish I suppose to just start some medicine and never really investigate the root cause of the problem (although the meds would be SO much easier!) If I do not trust a doctor then it is time to move on to another one. My gut tells me to stick it out and do what Dr. O says and so that is what we will do. I just hate my baby having to keep going through all of this stuff. I know that she doesn't know any different and to her this is all just "normal" but I know it isn't normal and that is so hard.

Ralph

So the first day home was pretty much gravy except that we were tired. I had updated Thursday that things were going well, and they were, until Thursday night/early Friday morning. We went to my nephew's football game and Anna was all over the place. She was up and down the bleachers. Apparently she didn't get the message that she had surgery 2 days prior. We got home and put the kids to bed and got Anna all hooked up to her feeding pump. Things were quiet (except for Kenneth's snoring) until about 4:30am when I was greeted with a showering of Anna puke. I'm talking a whole night's worth of tube feeds plus a bunch of other undigested food that had apparently been hanging out in her stomach for awhile. It was vile and it repeated 2 more times, each one right after I would finish cleaning her up from the previous time. Kenneth was up doing laundry like a madman trying to keep up with the Ralph rate. Although she never really had any fever to speak of we hoped it was a virus and not that she was not tolerating her feeds. She laid around a lot Friday so we just knew it was viral. Friday night we just ran Pedialyte through her tube for half the night and she did fine. We thought the "virus" was gone. Just to be on the safe side we restarted her feeds last night at 1/2 the prescribed rate. They ran at 15ml/hr until about 6am when it happened again...the puke monster reared its ugly head. This time it was a bit less and luckily we were sleeping in the recliner under a blanket so the clean up was much easier and thank goodness because Kenneth went back on duty today. So, it appears the virus was no virus at all. I think tonight I will skip feeds all together because I have to work tomorrow and will leave early and do not want Christy to have to deal with puke. I plan to call Dr. O's office first thing tomorrow and see what we need to do. She probably needs something to "jump start" her gut for a little while. I knew there would be bumps along the way and this is just one of them. I am exhausted beyond what words can even express but still feel we have done the right thing. I know this will resolve and she will do fine. This seems to be a pretty common thing in newly tube fed kids. I am giving boluses of Pedialyte to prevent dehydration and she is doing OK with that so I consider that good news. I know God's plan for us is perfect and that all of this has a purpose.

Microvasive Button

We got to come home yesterday shortly after lunch and all is going well so far. We gave Anna a bolus feed yesterday afternoon and then ran her on the pump throughout the night. She woke up once asking for a bottle and once with pain. She drank about 3 ounces when wanting the bottle and then we gave her Tylenol for pain and she did fine with those solutions. I expected her to be hungry because she had not had anything by mouth in almost 2 days. She had Cheetos for breakfast today (her choice) and ate some jello for lunch. I just gave her another bolus feed since she didn't take much lunch. She is already getting used to it and just laid on the couch and let me feed her. For the past month or two that we have been toying with the idea of the tube I had googled a million things about the tube and never really found the specifics of what I was looking for. I am going to try to provide some of that information here so that maybe the next person who ends up where we are will have a place to go and have some answers to their questions. Anna's Gbutton is called the Microvasive and it is manufactured by Boston Scientific. It is small and feels like it is made of silicone (not sure about this though). Here is a picture of it..

I had just given her a bolus before this picture and LOVE that her belly looks so full!! So anyway, to fed her you just open up the little flap and hook the feeding set to it.

The little blue piece just plugs into the hole in the button. We taped the tubing to her stomach last night just to prevent it from pulling. The button has come open without us knowing it a few times for whatever reason (I think the car seat has something to do with it) but the button has some type of one way way valve so things will not leak out unless we use the tube that is to vent the gas out. We haven't had to use that yet though. So even if it comes open it will not leak which is nice. The pump is tiny and comes with a little backpack that the pump and food bag fit in it and we just hang it up on the wall by the bed. The blackberry by the pump is just for size reference, it really is a much smaller pump than I expected.

Thank you again for your continued prayers. We have been blessed beyond measure!

Quick Update From Cook's

We got a call from Cook Children's yesterday that they would be placing Anna's Gbutton today. That is service- you agree to the tube on Friday and have it placed on Tuesday. So we came in early this morning. All is going well. I do have to say that Anna has been in a bit more pain than I expected but she is well controlled with her pain meds. About 6 hours after the tube was placed they began running Pedialyte through it. They will do that until about midnight when the will start with the Peptamen. The home health company is supposed to deliver our feeding pump and a case of Peptemen before lunch tomorrow and then hopefully we can go home. They will stop the continuous feeds in the morning and give her a bolus feed and make sure she tolerates that also. I have to brag on Cook's- this place is awesome and we have been treated so nicely from the housekeeping staff and cafeteria staff to the nurses and physicians. It is so nice to have a wonderful children's hospital to go to that isn't too far away. Carly is staying with my parents and she is doing well also. I was quite apprehensive about leaving her for a hospitalization since the last one I left her for lasted so long but she has done well. She came to visit Anna today but was a bit afraid of her due to Anna's IV and feeding tube. The IV will be out before we go home and I know Carly will grow accustomed to the button and all will be well. God has really taken care of us right down to the tiniest detail, as he always does. I have to say that watching the nutrition flow into Anna's body has also breathed new life into me. I have not felt this relieved in a very long time. I know now that no matter what she chooses to eat, we will nourish her. I know there will be bumps along the road but I really wish we would have done this sooner! Thank you so much for your continued prayers for us! I have not really had much sleep (not that that is new) so I hope this post makes sense but if not, oh well...