Swimming Fun

Kenneth is on duty today and we miss him! We did our best to have a fun day anyway. Carly and I chatted about what today was really about. I think she kind of gets it. We had a fun lunch and then some swimming. Anna and I are worn out but Carly is still going full speed ahead. I changed things up a bit with Anna today and am trying having her wear her pump/backpack and doing feeds during the day and we will skip it tonight. If this works then great! I have not noticed that she has taken any more or less orally today than any other day. That has been my fear with daytime feeds- that it would diminish what little appetite she does have. If it does not work we shall survive anyway. If it does indeed work than I will have to see if the daycare would be willing to work with the pump. I know that is asking a lot but I am hoping they will accommodate. Hope you had a great holiday! Thank you so much to all the soldiers past, present, and future whose sacrifice allows us to live in this wonderful country! God Bless America!

No Manual Provided

I do not know whether to laugh or cry. We had friends over tonight for a cook out. When the food was ready I fixed Anna's plate. I did not put much on it since I knew she would not eat it. She sat there in front of the plate and I got busy doing my thing. I went over to check on her and the plate was mostly empty. I told her how proud I was of her and she said "I done" and I got her down from the table. She ran off to play with the other kids. I later picked up her plate and found all of the food packed neatly under the edges of the plate. It was positioned perfectly so that I could not see it there until I picked up the plate. I sighed. I really thought she had eaten. I don't know whether to laugh because she so cleverly hid the food or cry because I am so frustrated with her lack of eating and for my inability to fix the problem. I do not know how to express how hard it is to watch your child starve. She does not want to eat much during the day and she keeps waking up at night during her feedings and saying "ow, ow" about her tummy and trying to disconnect herself from her pump. I am so frustrated. I am not asking for a pity party, just a little understanding. Anna did not come with a manual. Everything I have had to do for her has not been done without careful thought and consideration and countless hours of research. Believe me, I would love for her not to need another procedure or another doctor or another this or that. But she does and this is our reality. You don't have to like it but I ask you to please accept it. If you can't accept it then I ask you to please respect the fact that I have no choice but to accept it and deal with what comes...

Another Day, Another $50

Another day, another dollar (or $50 spent at another appointment). Anna had a GI appointment today. Carly went with us too this time and we stopped off on the way at my friend Rachel's new house and had lunch with her. Here is a synopsis of the appointment.

1. Anna gained 4 grams a day but should be gaining 8 grams a day. She had gained more but lost a lot of it when she was sick about 2 weeks ago.
2. She is still eating better than before the dilation but not near as good as she was right after. She is not tolerating near the tube feeds that she was tolerating right after the procedure either. The dilation is fading.
3. It was supposed to last at least 6 months and we are only sitting at 6 weeks out.. Dr. Ogunmola will not balloon kids more than 2 times, and especially not if it isn't lasting long enough.
4. Anna likely needs the pyloroplasty without fundoplication. Dr. Ogunmola says this is a hard sell to a surgeon. They really do not like to do one without the other.
5. We are to double the erythromycin and if tolerated triple it to push the pro-kinetics as far as we can.
6. If the erythromycin is not enough he will balloon her again and expect the same results as the first time- that is a rapid resolution of symptoms and huge increase in appetite and then a fairly quick return back to the previous problems.
7. Only after that clinical proof X 2 that the motility really is the cause of all the problems will a surgeon buy it and fix the problem.

We left our house at 11 am and did not get home until about 6 pm. The kids were fine on the way there but proved to me 100% on the way home that they are not travelers. Anna cried all of the way from Denton to home. I never figured out why but I did figure out how annoying it is to drive 45 miles with a crying 2 year old who cannot tell you why she is crying. I know most kids cry a lot but Anna does not so when she does it really gets to me. So I did what any responsible and loving parent would do- I turned the radio up really loud and ignored her. It didn't make her stop crying but it sure did make Carly and I tolerate the ride better.

We had been letting the kids stay up a little later at night since it is summer but those days are over. It was nice that they slept a tad bit later but it is not enough to trade for the peaceful quiet bliss that comes every night after they are sound asleep. Kenneth and I both decided it is worth getting up earlier to have some time to ourselves at night. I think I hear that quiet time calling me now...

Just Fine

Debbie (Sooner Start Coordinator) and The Amazing Brad (speech therapist)

We had an Early Intervention meeting today. It was supposed to be to update our IFSP (Individual Family Service Plan). The plan was to officially take Anna from weekly speech to speech every other week. Instead, we decided as a group that Anna would instead graduate from speech for now. She is doing better and better each week and we collectively decided to just let her go and see how she does. We all agree she still has some major articulation issues but that will hopefully come in time. At 2 years old it is more about vocabulary and less about clarity. At the time articulation becomes an age appropriate skill we will re-evaluate. She will be in school by then and would then receive services through the school district. Debbie feels Anna may need some other therapy at that time for fine motor also. For example, a 2 year old is not expected to be able to write but at 4 she will be. We can't really see if she will have that need until the skill we are evaluating is a skill appropriate for that age level. I also told them that I think even special needs kids deserve a break from school and therapy and I want Anna to have some time to just be a kid. Her life has always been filled with therapy and doctors and hospitals and I think it is important that every now and then she gets a break. I do not know if I will ever be able to thank Brad and Debbie enough for all they have done. They have helped guide me through a system I knew nothing about and actually made it bearable. They found me at my worst and have followed this journey along with me. They gave Anna the skills she needed to roll over, sit, crawl, walk, eat and speak. How do you ever thank someone who does all of this? I cried after they left today because I was overwhelmed with the emotions that came from realizing we have cleared another hurdle. Each day it is sinking in more and more that Anna is going to be just fine!

Responsibility, Revised

I had written a post earlier today but it was brought o my attention (once again by my voice of reason a.k.a. my sister) that I had potentially repeated too much sensitive information. In an effort to not violate HIPPA (and be fined and spend the rest of my life in jail), I deleted that post and am starting over.

I will not tell you where I work. I will tell you that it is a wonderful place despite what I am about to tell you. The thing is, I am pretty sure what happened at my hospital can and does happen in all hospitals across the country. It has really made an impression on me and bothered me in ways I cannot explain. I do not know the solution or the answer but I know that ignoring the problem will not make it go away. I think the responsibility of health care providers to tell the truth to their patients will do more to fix doctor-patient relationships than any other single thing. Sometimes it is not all about the litigation or what someone can do with the truth. It is more about people just needing closure and deserving to know what really happened.

I believe in telling people the truth. I am honest sometimes to a fault. I do not hold much back (as you might have gathered if you read much of this blog). I think others should be honest as well. Sometimes being honest is like handing someone a loaded weapon in that the potential really exists for someone to get hurt. Even with that in mind I think the truth should be told without exception.

I am an ICU nurse. Our nurse patient ratio is 1:2. I am expected to think critically and really understand what is going on with my patient. As an ICU nurse you know everything about your patient without even having to go back and look at the chart. Out on the medical/surgical floors it is so much different. Those nurses have a 1:7 nurse to patient ratio. They are expected to work like a machine. They have little time to really stop and consider the implications of what they are doing. They just quite frankly don't have time.

An order was written by a doctor and it was written incorrectly. It was written so that a patient would get 15 more doses of a medication than they needed and it is a dangerous drug. It is a drug that when levels in the body get high enough can cause a lethal arrhythmia and a patient will die. Because the doctor wrote the order incorrectly and the pharmacy didn't question it and neither did the nurse who had 6 other patients on the med/surg floor, the patient went into cardiac arrest. He was coded, revived, and then brought to the ICU where I work and was placed on a ventilator barely alive. He suffered a series of other health crises and eventually his family withdrew care and he died. Although he suffered from multiple medical problems prior to this, you could have given that medication in that dose to a healthy person and it would have likely had the same effect. The patient died as a result of an error made by a doctor contracted by the hospital, and a pharmacy run by the hospital, and by multiple nurses employed by the hospital.

Here is where the problem is. The family was never told what happened. They were never told that the hospital's error caused his death. Instead, they will be sent a bill for hundreds of thousands of dollars they cannot afford for care they only received as a direct result of something done in error in the hospital. I do not think for even a moment that any of this was done with malice. It just so happened that all of the holes in the swiss cheese lined up just right and all of the safety checks in place fell through. Asked directly I would have told the truth, but the family was not very educated and didn't even know to ask or what to ask. So who does the responsibility to tell the family the truth belong to? The hospital, the doctor, the nurse? Who is going to own the fact that this man is dead because of a mistake?

Carly's Big Week

She graduated from kindergarten on Thursday night. She is officially off for the summer. The program was adorable. It was a jungle/safari theme and the kids did a wonderful job.

The soccer season is officially over as well. Her team had a swimming and pizza party. She is so proud of her trophy!

The "Blue Angels" Makenzie, Olivia, Carly, Kaitlyn, Payton, Leana, and Sway

Dress rehearsal for next weekend's ballet/tap recital

Yay, we are almost done!!

I really enjoy my kids being in activities but I look forward to the break in the summer. Iam so glad we are almost there! The kids are at Kenneth's mom's for the night and he and I are going out on a date. The times we get to do this are very few and far between. I am sooooo looking forward to a night out with adults! Off to the shower I go...

"Life Support"

What a difference a day makes! The Dr's office just called and Anna's repeat labs were a little better. We will be starting her on iron. AHHHH, finally a problem with an easy fix. I just tube fed Anna with Pedialyte last night and she did fine with that. I wanted her to get a few calories but I was so overtired and just not up for any middle of the night vomit. I'll go by after work and pick up the iron and get her started. On a much lighter note, I must share a fact with you. It has to do with country folk and having their loved ones in the hospital. If their loved ones are on the ventlilator if must be referrred to as "life support" or they will not understand. For example, we have a patient who has been on the ventilator for about a week. The family is super nice but has approximately 10 teeth between all 20 of them. The daughter came up to the desk today and says,"Is my daddy on life support?" "Yes," the nurse tells her. "Oh, the daughter says. I thought that machine was just helping him breathe." I am glad I was not the nurse- I had to walk away and chuckle. Last time I checked breathing and life do go hand in hand...

Three Steps Forward, Two Steps Back

Today has been one of those days where I think crawling in a hole seems like a good option. It is rainy out today and we need the rain but I think it is contributing to my funk. Anna started running a high fever on Sunday and has been sick all week. We took her to the doctor but they aren't really sure what is wrong with her. The good news is that she is feeling better today and finally fever free so either the virus left or the antibiotics are working. I don't know which and quite frankly don't really care as long as she is well. In the course of her being sick she had some blood work done that showed her to be fairly anemic. She had blood work done about 2 months ago and there has been a fairly significant decline in her levels. Part of it may be due to being sick but the last labs were done while she was sick also so I don't think that has much to do with it. It is probably iron deficiency anemia but I am confused because her nutrition over the past month has been better than ever. The treatment for that is simple, give her iron, but adding iron to a kid who already has stomach problems and horrid constipation is not really going to be all that fun. She had more blood work done yesterday and we will see where to go from there. Just add it too the list since we didn't already have enough to deal with. On top of that it appears her balloon dilation was short lived. We knew that was a possibility but had hoped it would last 6-12 months like Dr. O had said. Instead we are back to square one with a kid who won't eat and who is vomiting up all of her tube feedings. She has already lost over a pound in 5 days. We had a GI appointment yesterday but it got cancelled and rescheduled for the 26th. Great! I plan on talking to Dr. O about whether Botox injections into the pyloric sphincter are an option or if we should just head straight back to the surgeon and have the pyloroplasty without the fundo. I do not regret the dilation because at least now we know what the problem is and that the fundo isn't necessary. I just regret that over $10,ooo that was spent on it and it only lasted less than a month. I am stressed about money today too. I know God will provide, that isn't it. We have money to pay our mortgage, for our cars, utilities, food, and that kind of stuff. What we don't have is the money to pay all of the medical bills we owe. I really really want to pay them. They provided a service and although my insurance paid a lot we are always left with a balance, a balance we cannot afford. The whole medicaid waiver program denied us because I was not able to get all of Anna's medical records together in what they considered a timely manner (try collecting them all in less than a week- impossible!) I guess I will collect them now and then reapply. I need some sleep. I have been up with Anna the past 4 nights and I think I am just worn out. I will get out of this funk. I think I can. I think I can...

The Promise Walk

The DFW Promise Walk for Preeclampsia was held today. We had a great time and enjoyed seeing some old friends and meeting others for the first time. Are you aware that every 6 minutes a mother and her unborn child face serious consequences because of preeclampsia? I also learned some other things I did not really want to hear but am glad I did. Having had preeclampsia raises my risk of heart disease to that of a pack a day smoker even if I am in perfect shape otherwise (which I am not). It made me aware of how diligent I need to be in matters of my own health. The DFW walk raised over $10,000 alone and there are walks also being held all across the US in the next coming weeks. I pray that someday, somehow this disease will have an end! Thank you again so much to those of you who donated!!!

Update To Yesterday's Post

I called LabCorp and spoke with the Cytogeneticist about my concerns. I am glad I did because I feel much better about this whole thing. He said that the test itself, not the information obtained from the test, is still somewhat in the experimental stages so it has to be listed as "for research purposes." The data itself is not what is used for research. Until there is more peer reviewed literature and studies about this particular test it must say that on the test results to make what they are doing legal. Secondly, I told him how I was bothered by the fact that it stated they would be archiving my child's DNA (if I was reading it correctly.) He said they destroy the DNA itself. What they archive is the DNA sequence in numbers and letters as "data" not the actual DNA itself. It is still somewhat bothersome that they have Anna's "code" but much less bothersome than thinking they have her actual DNA stored. He said they do not just perform further testing randomly but that as new genes are discovered the doctor can order more tests to see if those certain genes are defective. Since they already have her "code" they can just see if that flaw is there in about 10 minutes rather than 3-4 weeks like it takes now. We will not be having any further testing done but she is archived anyway. The guy actually thanked me for calling and said that sometimes they have a hard time wording things so that the general public will understand what they mean and that after his conversation with me he thinks maybe they should go back to the drawing board about the wording printed on the labs. We discussed how it could be worded so that it made sense that the data, not the actual DNA, was stored and that the results are not for research purposes. I thanked him for his time and that was that. I am so glad I called and didn't sit around worrying about it.

I Feel Violated

arr(1-22,X)X2 Yeah, what is that? It is the result of Anna's latest round of genetic testing which again reveals a genetically and chromosomally NORMAL child. She had the Chromosome Microarray done after our last visit with the geneticist. We WILL NOT be going back. That test was another $3000 and it again told us that our child does not have a genetic problem. I do not understand why we keep being referred back to genetics but I am refusing to go back. More than anything we are not going back because something that is stated on the lab results kind of freaks me out. It says,"Archival data review will be performed as newly defined dosage sensitive genes are identified...Results of this test are for research purposes only...The result should not be used as a diagnostic procedure without confirmation of the diagnosis by another medically established diagnostic product or procedure..." I was not told at the time of the lab draw that this test is for research purposes. I did not EVER consent to that. It is not that I have a problem with research. I know research is what moves us forward. However, I feel that whether or not we choose to participate in research is OUR choice. We were not given that choice. We were told to have the lab done and I assumed (stupid, I know) that it was for OUR information and to further develop a treatment plan. Instead, the treatment plan is the same but they are now storing Anna's DNA for later testing. Is it just me or is this whole thing kind of creepy? I plan on calling LabCorp to see if they will destroy what they have of ours because I am not interested in any further testing. I do not care if the further testing is free or not, this was never about the money, it is about a person's right to whether or not they want to participate in research and whether or not they have consented to storage of their DNA. I think there comes a point where the parent has accepted what happened and the doctor can't accept it. I think we have hit that point. Babies born with IUGR are at an increased risk for developmental delays and cerebral palsy due to reduced placental blood flow. That is a fact. I wish it would not have happened but it did. We cannot go back and we cannot change it. I prefer to take what is and move forward with it. I wish others could do the same!

OMG!

If you are the charge nurse in ICU and get called to a code 15 minutes into your shift and then after working on the patient for 45 minutes before finally getting a sustainable pulse back and then you move the patient to ICU and they code again and in the midst of the code the power in the hospital goes out and you are running on a generator which does not run the air conditioner and you code the guy for another 30 minutes before getting him back and you are sweating like crazy and in the midst of that you have an internal and external disaster drill and have to send some of your nurses to ER to triage and have 2 of your nurses fighting and yelling at each other in the break room while you try to diffuse the situation, your name would be Jamie, you would be the official @*it magnet, and this would describe how your day started. It did not get better from here. I had a few drinks after work and will officially be going to bed now because I am suffering from exhaustion and about to collapse from the weight of the @*it magnet I carried around all day. If you need me you can find me in my bed, but only for a few hours, because I have to get up early and do it again. I love my job!

We Forgot (For The Second Year In A Row)

I must have smoked some crack yesterday or something. I agreed to go in to work today and put in some overtime. The overtime part is acceptable but the part about trying to work on a day Kenneth is on duty is the part that would make a crackhead smile. Normally Kenneth and I never work on the same day. Since I work 12 hour shifts it is too hard to leave at 6 AM and not get home until 8PM and try to handle the kids without him here. He works 24 on then 48 off. We are already in the poor house with all of Anna's medical bills so hiring someone to stay with the kids more than just a few hours in them morning is just not an option. Anyway, when I heard my boss say they were short handed today I said, "I can come in after I take the kids to school/daycare but I have to leave by 5." She was grateful. At about 6 this morning as I started getting ready for work I knew I had made a mistake. Anna was already awake and whining. I managed to kiss Kenneth good-bye and then get in the shower. I got the kids ready for school and fed and then realized we had 1 missing chihuahua. If it were my dog I would have said to hell with the little rat and left it outside. Since it is not my dog I freaked out. About 30 minutes later the dog reappeared. It was a good thing I was in a hurry because that meant I did not have time to beat said chihuahua. So I get the kids dropped off and still have 2 errands to run on my way out of town. I manage to get behind every 90 year old driver in town. I finally made it to work. It had to be a better work day than yesterday- I had a dead patient before 9AM yesterday (luckily after that things can only get better, right?). Work went fine today and I headed home and got Anna picked up from daycare and then came home and retrieved Carly from the neighbor's house. I then remembered that I had to go back to town (about 15 minutes away) because I had forgotten to pick up my blood pressure medicine and Anna needed Pull Ups for daycare(not that she is potty training, she just wants what all the other kids have so I pay twice what diapers cost so she can fit in. NICE)! So I did that, fed the kids some healthy McDonald's grub, got to go through the drive thru line twice because we got boy toys instead of girl toys and I could not handle the meltdowns, got them home, got them showered, got Anna medicated, snuggled with them briefly, and then put them to bed. I folded one load of laundry, ate some dinner, got Anna's feeding hooked up, and now here I sit. I am so freaking exhausted. If I ever have the idea to quit the job I have now to opt for a 9-5 M-F please please please shoot me! I do not know how people do it. If I had actually had to do homework or cook dinner or god forbid throw in soccer and ballet and I would have been sunk. I got the kids to bed 30 minutes late as it was. So I will stick with this 12 hour shift thing. I realized today that it is a blessing! It is exhausting while doing it but so worth the trade off. On the days I am off I have from the time school is out until bedtime to get everything done and on the days I work everything is already done when I get home. And thank God for my husband who does laundry and dishes and helps with the kids. He called me this morning to tell me that they had been discussing wedding anniversaries at the station and he suddenly realized that today was our anniversary and wanted to wish me a happy anniversary. The sad part? I had forgotten too! Maybe we'll celebrate this weekend, if we remember...

I Need To Get This Off My Chest

Dear M.K.,

Sometime early in 2008 my life was forever changed. That was when Anna was diagnosed with CP. From that moment forward I have held you mostly responsible for what happened to her. When I confronted you, your words were harsh. There is still a hole in my heart that aches from the loss of the normalcy we will never again have. I tried to get even and it didn't work out. It didn't feel right and in fact it made me feel worse. It only made the hole in my heart deeper. I want you to know that I forgive you. I pray that God will bless you and that the peace he has given me will also extend to you.

Sincerely,

Jamie

Zevex Software Update

There has been a problem with the Zevex Enteralite Infinity Pumps versions R3.13 and lower. When you turn the pump on it will give you the software version. If it does not read R3.14 or higher then you need to call your Home Health Care Provider and have your pump either fixed or replaced. The problem is causing the pumps to infuse either too fast or too slow. Too slow is not a huge problem but too fast is a really huge problem. We had R3.11. When I found out about the update I called Central Line Infusion where we get our pump and tube feeds and they had no idea. They checked into it and ended up sending us a new pump. If you are using this pump you need to call your company and have them fix the problem because I am not sure how widely the information about the need for the update was spread. If I had not read about it on Parent2Parent I never would have known. I just wanted to pass the information on.