Monday, October 13, 2008

An Overwhelming Day - Physically & Emotionally

Before we begin tonight's update, we would like to extend our prayers to several families from the VACTERL Network, that because of Elias' diagnosis, have prompted them to look into testing for their children as well, just to be certain. As with Elias, VACTERL explained a lot, but did not tell the whole story. Unfortunately, Fanconi Anemia does. We hope that these families get wonderful news of a negative result. While they think of us during our difficult time, they are entering a frightening phase of waiting for results and we pray for them. Best wishes to you all and kudos for being so brave!

We will now focus on the events of today that were very chaotic, confusing, and eventually deciding that Elias will not come home tomorrow. The really odd part of this, we are not 100% certain we can explain this situation. So I guess the facts will have to suffice, and maybe someone out there will make sense of it all.

The day began bright an early with a visit from our home respiratory therapist. She was here to help set up Elias equipment and teach us to use it all. The process took a little over three hours, but we feel like our mini-NICU is fairly cut and dry. So hopefully we will not have any issues once he comes home. The nursing agency was trying to set up more nursing visit, which we need desperately, but not knowing anything in terms of discharge plans for Elias made it a little difficult. We also were attempting to cram in meetings with several different Doctors and hospital personnel in the span of about 4 hours. As we had explained on Friday and through the weekend everyone was a little unsure of things. Things were spinning wildly and overwhelmingly out of control as we rushed around to obey the orders we desperately sought out weeks ago. We are not procrastinators and with everything having to be crammed into tiny sections of time is placing us way outside our element, leaving us more than flustered. So trying to juggle those meetings and all the others we were suppose to have, without times mind you, made it difficult to try and schedule anything with nursing. After speaking to the case manager on the phone early in the morning, it appeared we were going to take a step-back catch our breath and work towards next week. Then a few hours later I receive a call from the nursing agency telling me the case manager was pushing them to send nurses out today so we could be ready for discharge. Confused at how the most important people involved in this process missed the memo, we trekked up to the hospital. I think we had little cartoon bubbles over our heads, sort of like the Arby's commercials, telling everyone exactly how we felt as we walked into the NICU corridor. The case manager and some nurses were chuckling, telling us how things are always like this at discharge....tell me why? How can you do something repeatedly hundreds of times and not perfect or adopt a system? Flying by the seat of your pants and chasing you out the door yelling WAIT WE FORGOT ONE MORE THING!! (insert deep exhale now) So today the story with the HME toleration is, pulmonology is now being called in to decide how long Elias should be required to tolerate this before discharge. What happened to four hours? Why were we waiting until less than 24 hours before target discharge to request this information. When confronted with the question they all had blank stares. To make it even worse they start in telling us how tolerating the HME is not a quick process and is usually done like a therapy to build the tolerance. Again we asked the obvious question...why did we wait until last week to make this an issue and why was this "therapy" not executed? I got the answer I dreaded hearing and almost, but did not turn into a frightening Halloween costume early. That's why we like to discharge from the transitional hospital (the hospital we did NOT want Elias to be transferred) rather than here. So it was decided that one hour was sufficient on the HME. Elias tolerated it as they slipped it on while he slept, but after 55 minutes he woke up and lasted only 10 before we finally pulled it off because he was having trouble. 5 Minutes prior the Doctors all came in and say how "great he was doing." Now really, how many kids are going to be asleep and stay asleep when you put them in a car seat? So that test proved nothing. While he struggled of course no one was around to witness this. So with this information if we can have the nurses set up it looks like now Wednesday or Thursday might be the day, but another person told us it depends on his HME trial tomorrow. So the bottom line is we will have to just tell everyone when he is home, rather than announce it ahead of time. Hopefully, tomorrow and Wednesday we can work out and finalize this nursing situation to begin.

In the meantime, while that was going on we also met with the hematologist. She did not have a lot of input at this point but wanted to meet us and explain a few things in regards to Elias blood checks and bone marrow biopsies. Basically, every 2-3 months his blood cell counts will be checked and once a year beginning closer to his first birthday will be the bone marrow biopsy. If the blood work starts to show signs of decreasing cells then a bone marrow biopsy would take place immediately. She told us she was discussing with colleagues if it would be a good idea to look into the potential transplant matches early, just to see how many matches might exist if and when Elias needs it. Or should that hold off until you reach that point. We will discuss that option more in December when we follow up with her again. I guess the main thing we got out of the conversation, was that this is such a rare genetic disease that there is not much data on options, survival rates, and occurrences of cancers. This makes it difficult to predict what the trend will be, but from what they have, 6-7 years old seems to be a prime time for developing issues to begin surfacing. It is a watch and wait scenario, the worst kind. You know you can't dwell on it, but you also can not live under false optimism hoping to wish this away. I'm sure we will develop a coping mechanism for this, but every 2-3 months the anxiety will rise until results are in and we know nothing has changed. It is going to be something we will have to learn to balance and be prepared if and when the time presents itself. I know we are still slowly opening up about this, but things have felt dark the last few days, more stressful, and less productive and why? Because we are living every parents worse nightmare? Maybe, it is the fear we can not be as strong as we have been thus far. That eventually, we will cave in or break down. Elias deserves more than that, so we have to find a way to give him more. It is such a hard thing to describe and even more difficult to figure out what the soul searching is telling us. It is turbulent and frightening, yet lucky to have an explanation for all his problems and issues. This is something that will certainly take a great deal of time to sort out emotionally. We are glad that when we are in Elias presence, and he gives us that smile nothing in the world matters more. Everything melts away and all is right for a change. We just need to find a way to combine those worlds, for us and every other family that is faced with a child that has a potentially terminal disease.


  1. So Benji was admitted to the NICU three times during episodes of complete and utter chaos. Each stay ended with a discharge a few months later also full of complete and utter chaos. We always left with unanswered questions, numerous "what if's", and too much information to digest. Different hospitals but same lack of planning. Looking back I should have just yelled "stop!!!" and told them how the plan was going to work on our terms. Yet each time we "escaped" with the thought in the back of our minds that at least we were leaving with our child after so many days of going back to the hotel empty handed.

    I do believe that you are experiencing every parent's worse nightmare as far as Elias' new dx of FA. Life should not be able to change the rules when you just start to accept what you have to work with. We experience this sense of unfairness each time Benji's kidney failure progresses a stage. After weeks of angst, we generally are able to get our lives, our marriage, our children, and our faith back on track. We have found great comfort in the pallative care docs even though we hate to admit it and at times avoid seeing them. I don't know if anyone has talked to you about them yet- as if you need one more specialist- but for Benji they have been great at helping us to identify both big and little things to improve his life. They were instrumental in helping us avoid transfusions, get his port placed, solve some jtube crises, and ease our minds that while our son may have a shortened life span, his care will be maximized not just by us but by all the people who love him. Plus, being Benji is not the typical pallative care kid like so many who will die shortly from burns, trauma, cancer,mito, etc. they really seem to spend a little more time making his life "normalized" by playing, etc.

    We will pray that your plan for the week develops some clarity as it goes on. Lori

  2. I'm not a therapist, but why can't you break down? Are you not entitled to it? This dx is a massive change in your lives, at the very least. I know you are frustrated and dealing with so much, but in case no one's mentioned it - I think you both deserve some counseling/therapy to figure out how to process this and then to live with it. I know it helped enormously in my own life after my 3rd miscarriage. And my health insurance paid for it. Just my 2 cents.

    In the meantime, lots and lots of love and prayers your way. Kisses to the little warrior.

  3. My dear I have no words that will make you feel any better but I can tell you this... you are not alone. There are many of us out there who are fighting this fight with you for our own babies. My heart aches for you and I just want to grab you and hug you.

    I have to tell you that you are ALLOWED to cry, scream, be angry, be pissed off, to hurt, to be scared... you are allowed to be anything at this point. I was always the one who never would break down in public. I always did it in private and behind closed doors. My therapist told me that TEARS are the body's way of getting the "stuff" out. She told me whenever I feel myself about to loose it... go find a country road and DRIVE. Drive and cry and then come back and deal with the real world.

    I wish you many healing tears and am praying for you guys every single day!!


  4. Hugs and prayers to your family. Yes, you ARE dealing with every parent's worst nightmare and you do deserve a little breakdown. And for god's sake get it over with before you get that kid out of the NICU!

    I will be shocked if there is another VACTERL parent out there whose NICU discharge happened when they were told it would. I know we were put off for at least a couple of days as it seemed some slacker surgeons waited until the last minute for this test and that. SO ANNOYING!!!!!! I mean, to them it's just something to do at the last minute, but here is someone's LIFE on hold...literally! It really does make me mad. So, when they give you that exit survey don't just throw it out (like I did) - instead tell them this was a major problem. You're probably one of their biggest customers these days. ;)

    I for one CAN NOT WAIT to read your "we're home!!!!" post and see pictures. I can imagine it's hard to think about the future right now because you've suddenly had the future pulled out from under you. But there IS a future and there is loads to look forward to. Keep your eye on that.

    Take care,


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