Elias!

Well judging from all the emails and comments about the video it seemed everyone really enjoyed the show Elias put on. Wasn’t it great? It is amazing the way he does things and with such enthusiasm. The jungle jumper has become a new favorite getting into it several times a day and having and absolute blast each time. We were bursting with happiness Saturday when we first put him in and saw how excited he was. We love seeing that boy smile and get excited, he deserves that.  We also got some potential good news today about nursing. There is a small chance that we will have some night nursing soon. Hopefully, it will come to be and will work out as it should without any hitches. We are not going to get excited yet until it actually happens and is settled for certain.

We continue to have issues with that darn mucus fistula and despite the negative culture for C-diff and other infections we are not comfortable with what is going on. Unfortunately, as you know no one wants to work with it. It is really making him uncomfortable, making his skin breakdown, very red much like g-tube breakdown we were accustom to. I just wish we could get some sort of answer with this.

Tomorrow Elias will be getting another Immune globulin (intravenous) (IGIV) infusion. This will be the first home infusion and he will likely be continuing this every two weeks through the winter season. He handled the first two infusions in the hospital just fine, but to play it safe they are doing it slow again since it is the first time in the home. It will take four hours to infuse. We also have an ENT appointment (airway) and urology this week. Early next week we will have our IFSP evaluation meeting to restart the home therapies along with finally getting into the new local pediatrician and seeing pulmonology. So the next couple of weeks are really shaping out to be quite busy.

On a final note, yesterday Elias’ trach tube somehow came out. The trach ties holding it on is Velcro and somehow came undone and the tube just fell out.  Katharine and I were sitting about 10 feet from him looking at some catalogs online when I heard a buzzing sound, much like a cell phone vibrating. When Katharine walked over to the play pen where Elias was playing she saw him smiling at her on one side and the trach tube was clear on the other side. Once Katharine announced the finding as she picked him up out of the play pen I had jumped up and grabbed the emergency trach tube. Thankfully it went in without issue and Elias was back to playing within minutes. It is only the second time in the 17 months that has happened, thank God! It is one of those moments where you just sort of stay calm and do what you were trained to do when it happens, but after the fact you sort of lose it and the adrenaline really starts going. We can really do without the extra drama Elias! :-) We are not 100% sure how or why it happened, but it reminded us why he has to have someone awake and alert with him ALL the time. We were just glad there was not anything more to it than there was and no other interventions were needed. Hope everyone has a safe and happy week!

December 5, 2009 (click to view)

Well once again we being this update with an apology for not updating sooner. It has been extraordinarily busy this week and when you are the one that has to initiate follow-up it adds to the growing list. We do still have more photos from Thanksgiving to share and maybe over the weekend we can accomplish getting those up.  Our ENT appointment was a little disappointing. It was so because we really did not come out of there with any new knowledge or a plan. It was more of a meet and greet so to speak. He did take the opportunity to discuss his thoughts. Basically, he needs another more complete ABR before any real decisions can be made. There were some positive signs from the MRI that was done back in September, which was a shock to us because we were told something quite different. However, before we get too excited over those results the merely tell us that certain options are now open to us surgically if the ABR results and a pending CT scan show certain tendencies. His words were, “ there are about 12 different scenarios we could go with, but I do not have enough information to make a confident decision, yet.” He promised to be an advocate for Elias and did recognize that there is a time crunch of sorts to try and achieve certain goals. Unfortunately, Elias airway will be the main dictator for success on his end. That is certainly frustrating. We did press the hearing aid issue and he agreed with us, but he had a very solid argument against moving forward. An argument that we can buy into and understand. The main thing now is to get this ABR completed with the next surgery, which we will hopefully get a timeline for in the next 2 weeks, but it looks like January sometime. Once we get all the information from that he can narrow the choices down. One thing Katharine picked up on reading between the lines, while he would not come out and say it he strongly suggested that hearing aids will be something we try, but it seems as though he does not think they will be effective enough if at all based on what he knows so far. He wasn’t going to commit to anything yet, but as we said it was the hidden message Katharine picked up on. That doesn’t mean that Elias can not have some element of hearing still. There would just be other methods to achieve this. It is all very confusing and frustrating we know. He is a very knowledgeable doctor and we appreciated his candor and opinions. We also feel that he will do everything he can to get Elias the abilities he needs through some method, be it surgical or other.

The nursing situation has not changed since our last update. Honestly though if there is anything in the works we do not know. We have left messages and have not had them returned. I almost get the feeling they are avoiding me. Well they have to call today because the FA team ordered another IVIG for him on Monday or Tuesday. So I will just bring up my concerns then. Other than that, not too much going on. Elias is still having a blast at home and becoming more and more curious with each day. It is so great to watch him flourish. We are  waiting for a date on a new IFSP meeting for his home therapies and hope to get that rolling very soon. Well back to the task list that is waiting, but we wanted to take a moment to update everyone. Have a great weekend.

Here are some more photos we were able to get ready. There are still more to come too!

Click Here to view the photos 

Well we should have received results on the C-diff culture today, but apparently the stool sample was not in the proper container or on ice when it was brought to the lab. Another nurse came out to the house yesterday afternoon to get another sample so it will likely be Tuesday now before we hear any word. In the meantime, Elias’ mucus fistula continues to dump out massive amounts of drainage. Even with a gauze covering it his clothes still get wet and we are changing more frequently so the laundry room is getting quite a work out with his clothes. We have not given him his antibiotic the few nights because he was causing him to vomiting shortly after we would give it. He has not done that these last two nights. Now the doctors have to figure out is it because he is reacting to he antibiotic or is the C-diff contributing. Until we know about that they are reluctant to make a move, but the longer he goes without the antibiotic the higher risk for another UTI. Ah the wonderful vicious cycle. It has been discussed that if a change is made it would likely be to Bactrum, which is and was a medicine the FA doctors have asked in the past not to use because it is a marrow suppressant. However, Dr. Mehta ( Elias’ BMT doc) feels that since we have tried several other drugs without success that we are really left with no alternative. Fortunately Elias’ counts are stable enough that they would monitor him for signs of dropping a little more frequently and make the decision to discontinue it if he does show a certain level of decreasing numbers. It is also possible that a surgical intervention may be in the picture given the rapid occurrence of so many UTIs. Our next VCUG which is not scheduled as of yet after the failed attempt a few weeks ago would help give information if it is a worsening kidney reflux issue or a resistance issue to the prophylaxis medications causing them. Whatever the outcome we certainly have a bit of a hurdle to overcome and sift through to achieve the results we want.

This week we meet with the ENT ear specialist for our initial consult. He will be sharing a little bit about his long term thoughts for Elias in terms of surgical intervention and they things we will need to do up to that point. We are also going to discuss further with him the hearing aid issue and see if he has any pull in getting this ever challenging item moving forward. We are anxious to hear all that he has to share. Tuesday of course is the Occupational Therapy assessment and that should be light and easy. Other than that we are going to attempt to do a little light Christmas decorating around the house. Nothing too elaborate, but we would like for Elias to enjoy the spirit of the holiday. Things were so rocky last year at this time he was pretty much confined to bed and sick so often he never got much opportunity to experience the decorations. Besides this year he is more alert and aware and should really enjoy the lights, colors and decorative extras. We are looking forward to seeing his reactions to all of it.

We hope you had a chance to view the photos we posted earlier today. That is not all of them, but all we have had time to get prepared for uploading to the site. We work on them a few at a time and get them up as we finish them. We have about 40 more photos so watch for those going up. We were very happy with some of the shots we got of Elias. There are certainly some great photos of him with the most expressive faces! We will try to do some video at some point, but that process to get them online is even more time consuming. Here is to the anticipation for a positive productive week. Hopefully we will even make some more progress on the nursing staffing. We hope everyone had a wonderful holiday and that the rest of your season is full of blessings and hope.

Click on the collage below to see more. There are still more to come as we slowly but surely get them edited and uploaded! We wanted to share what we had so far. There were some really great photos and good times. Enjoy!

I apologize for not getting any updates up in the past week. There has simply been too much going on to even think about sitting down. The first week we were home it was all about getting everything reorganized for Elias. This past week has been trying to accomplish some unfinished projects we had to abandon the last three months. You know like unpacking still among other things. It has also been difficult to settle into a new routine, but hopefully going forward there will be some opportunities for updates to be posted.

Elias had a wonderful Thanksgiving. Grandma O & Aunt Kelly were up and cooked a wonderful dinner. It was the first time in 18 years we have been able to have Thanksgiving together! That in itself was something to be thankful for. Elias day was stable for the most part, only a few issues here and there, but nothing too overwhelming. It made for a fun and relaxing day for everyone. Elias kept us all entertained through the day. He was having a blast playing, sitting, moving around and some very funny & timely facial expressions. He had us laughing so hard and he was laughing along with us. He was so full of smiles yesterday, it was great to see. We got some great photos that we will put up as soon as we can.

Elias had developed C-Diff while we were in the hospital those final few weeks. This is a GI bacteria issue caused many times by certain antibiotics. This is a very difficult issue to resolve. From what we understand once it is in your system it never goes away. It goes into a remission phase and the spores can be reawakened by various things. The bacteria is so strong that hand sanitizer will not kill it. Guess that is why the bottle says kills 99.9%! Only solid hand scrubbing/washing for several minutes after contact will apparently kill this bacteria. He was being treated for it when we came home with Flagyl, a common drug for this. He had completed that course about 10 days ago. This week we began to notice and increase again in the mucus fistula leakage from his colostomy. It has a very distinct smell that is characteristic to the C-diff. So we know know why that has been leaking so much, no thanks to any doctors we have been asking. It was becoming apparent that this problem was not resolved. We called the FA clinic asking their advice, especially since we are still waiting to get into a local pediatrician. We have an appointment, but it is three weeks out and that was the soonest. They will not see us for “sick visits” until we have had an initial “well visit.” So they ordered a stool culture to confirm what everyone expects to be true, that the C-diff is still active. They came out yesterday to collect the sample and send it to the lab. Yes the home skilled care company sent someone out on Thanksgiving. We were afraid we would have to wait until Monday. We were thankful for that. If the culture is positive then they will start more medication, but probably not flagyl since it apparently was not effective. So we wait, as usual. Elias has also been vomiting a lot more than normal and until yesterday it seemed to occur when we gave him the new antibiotic they switched him to. Since C-diff can cause nausea  we are not sure if it is that or the antibiotic that is making him vomit. We only hope that what ever medicine the choose to place him on for the C-diff clears it up so we can at least eliminate one factor from that mystery. Although, that is the way Elias normally works. One problem, many outcomes!

We were able to get an OT assessment scheduled for this week. Once this is done then we can have another meeting with all his home providers and get all his therapies going again. We can not wait for them to see how far Elias has come in the three months since they saw him last. It should be exciting and fun to get that back into Elias routine. His PT/OT at the hospital also gave us some great suggestions for toys to get Elias that will be fun and age appropriate to play with but also will serve a therapeutic purpose. Things are really flying from the developmental front and it is so amazing to see him do all these wonderful things! Elias is determined to do what he wants to do, when he wants to do it and that is just another one of his amazing qualities. He makes us very proud parents!

Wow! The past few days have been very busy, uneventful thankfully, but busy here at home. Ah, that is nice to say, here at home. Elias continues to enjoy the life here. Rusty, our dog provides Elias with a great deal of entertainment without him even realizing it. Elias has become very aware of him and laughs often when Rusty is in the room. Something about the way he moves we think. Otherwise Elias has just been adjusting to a new routine. Well, maybe it is more us adjusting than him, he always just goes with the flow. Something we are thankful for and hope he continues with throughout his life. We did have nursing in Thursday and Friday mornings, but not yesterday or today. We actually just got our care plan for Elias Friday afternoon. For those who do not know a care plan is the instructions and guidelines to care for Elias. Without those it is virtually impossible to care for him without us telling them what, when and how to do so. That kind of defeats the purpose.  Reviewing the care plan this weekend we have found some interesting items enclosed. For instance, according to this document Elias’ mental state is disoriented, and they are also suppose to explain all procedures to Elias before implementing. That was a few of the comical things we noticed within this document. I think part of our staffing problems comes from two issues. Structural hierarchy and power struggles between the case supervisors and the schedulers being the first. The second, based on what our nurse was told about Elias, they are scaring potential nurses away with Elias complexities. Yes he is complex and yes he has a lot of things going on, but overall compared to what you would expect from all that he is easier to care for than the paper diagnosis suggests. It’s not a cakewalk mind you, but easier than you would expect. I am thinking this will need to be addressed this coming week if we still have made zero progress. We are approaching six weeks of search time now.

On Tap for Elias the next few weeks, Grandma O and Aunt Kelly will be coming for Thanksgiving weekend. We will have his IGG levels checked again to see how the last IVIG did and determine if more infusions will be necessary. We are being told to expect that he will get them roughly every 2 weeks through the winter. We also have several appointments coming up, mostly follow-up but we are trying yet again to get into our new local pediatrician. His mucus fistula of his colostomy is still giving us fits and none of the doctors want to claim responsibility they pass the buck to the surgical team. It is still profusely leaking and causing some horrible skin issues. We are just trying different things trying to fix it ourselves. We have not tried discussing it with the colorectal team so maybe they will be able to help us since they are the ones who will reverse it once the pull-thru is complete and healed. For the most part Elias has been accepting of the ventilator since we have been home. Last night however he started crying when we put it on him. It broke our hearts. He was crying so hard that it was setting off high pressure alarms, so we had to remove it. Fortunately Katharine was able to rock him for a brief period and lull him to sleep so we could reattach the vent. Not sure what caused his breakdown last night, but we are hoping that it is an isolated incident. Other than that we are just going to try and enjoy what we can as a family here at home.

I read something tonight that really connected with us and I thought this was worth sharing. I wish I could give the author of this very well worded explanation of what it is like to be a parent of a child with life-threatening or terminal diagnosis the credit they are due. These words are so very true and I would say an accurate depiction of what our lives our like from the inside. I hope the insight these words offer will reach you and touch you.

Parents of children with a devastating or terminal illness are often referred to, or viewed as, having strength "like a rock".
Albeit flattering, it isn't quite true.
It is more like the strength of an Egg.
An egg, you ask? Yes! If you think about it, you'll see my point.
An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be smooth or solid. Most children, at some point, are shown the famous "egg trick". An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken.
Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.
A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope.
Parents of medically fragile children are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered.
"Balancing an egg" while running a household, going for doctors' visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed!
Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence.
Unlike Humpty Dumpty though, parents of medically fragile kids WILL pick themselves up and put themselves back together again.
(ps...I can't take credit for writing this...I stole it from another mom's page and just ADORE it's honesty and way to view the lives of so many parents I love and adore)
Thanks Rachel for Sharing

Well we survived the weekend without incident. Elias is having a grand time being home. We do have some adjustments to get use to, but overall not much has changed in his care. We did reduce the number of medications he is on now down to four from nine! That makes things a little less hectic too! Yesterday was a day full of paperwork from the Nursing agency and the equipment company. I think we signed a forest full of trees. We had an orientation with the one nurse that they  have assigned to the case so far. She was here for about 6 hours yesterday. She seems nice, kind of quiet, but the agency brags about her like she is Florence Nightingale, we shall see. So yesterday was the first official day of home nursing and what better way to start off on the right foot than to have the nurse call off for the only shift we have covered. AWESOME! I’m sorry but it is so hard not to be cynical when you almost expect it. As for the staffing for the other hours, well not much progress still just continuous empty optimistic promises from the agency telling us how hard they are working to find people. Again we shall see how this plays out I just hope it is soon. The need for both of us to be working again is becoming more and more critical. We obviously incurred quite a bit in unexpected expenses in the last three months.  We are keeping the faith as always and praying a solution shows itself.
We have been extremely busy these past few days. It seems there has only been a few moments here and there to catch a breather. We had to redo Elias supplies, out with the old in with the new and reorganize the supply closet. It is becoming more likely that rearranging his room might also be necessary to make everything functional. We are working to minimize that process. We have been able to enjoy some of this time at home with Elias as he is exploring and playing. He has gotten to the point he is doing so well with sitting up that he wants to do it as much as possible now, that is exciting. We have also caught him trying to get himself up from the prone position to an upright. The PT at the hospital had been working on that with him but he was NOT a fan of it. However, there were several times over the last few days we saw him trying it. We just need to work with him more and I think he will get it very soon. The biggest issue is his arms and hands and the inability to weight bear as much, but his core muscles are becoming so strong that he should be able to pull up from the sideline position with minimal weight bearing need. That will be an exciting day when he does that. Once Elias things are all complete then we can focus on getting ourselves caught up around the house. Even though the days are very busy ,the nights are long, and sleep is a luxury we are delighted to be here. It has been wonderful to be here and watch Elias thrive and play.
We get a few weeks off before we dive back into follow-up appointments. We have three scheduled early December and we are working on several others that are priorities. Otherwise we are holding off until after the first of the year to add anything else to the plate. We are simply burned out with that right now and need some time to rejuvenate. We want to thank everyone for their tremendous showing if support during all of this. It has been particularly rough mentally for us since everything was so unexpected. It has been your love, thoughts and prayers that have helped us get this far without completely going insane. We just want everyone to know how much we appreciate all that you have done for us. 

Well today was the day that was meant to be to finally return home. After 59 days for this admission and less than 10 days home since mid-August we welcomed it with great enthusiasm. Unfortunately, the discharge was premature by two days and with great disappointment. This morning there was another incident with a nurse. Somehow Elias had managed to get his feeding tube disconnected from the port so the feeds were pumping straight into the bed, That was not the issue. The nurse came in to give Elias a due medication around 9 am. Apparently, she noticed it and put it back into the port, administered the medicine and then just left without saying a word to Katharine who was taking advantage of Elias resting to get some of her own. Katharine got out of the parent bed shortly after to check on him and noticed visually that he was soaked with feeds. Upon further investigating she noticed that there was a puddle of feeds that Elias was laying in. Why we were upset is why did the nurse not notice or at least say something to Katharine about it. She chose to ignore or was going through the motions so much so she failed to noticed the issue. Regardless, had one of us not been there Elias would have more than likely stayed soaking wet for hours. We discussed the problem and what we should do to address it. We decided that we were not going to sit around for another two days to allow this behavior to continue so that we can get to a more convenient day for discharge. Especially since we had just had a conference with the unit manager about things just like this. The charge nurse was called and the issue explained followed by, “ I don’t care who you have call, We are going home today!” The look on the charge nurses face was stunned. She realized and ultimately agreed that while this incident was not the reason it was the final straw. There was not too much resistance, but it did stir up quite a buzz. Apparently, Monday morning things are going to hit the fan! People had to be called at home over this so I can imagine they were not very happy having their day off interrupted by this. Our reasoning was obviously so profound they were bending over backwards to make us happy. It is a shame it had to end like that, especially since anytime we have to be admitted that is the unit we have to go. Unfortunately that includes transplant :( ventilator patients are not able to be on the BMT floor. Thankfully we are no where near ready for that and hope to be off the vent when that time comes. Overall, the fact that we came home two days early does not impact Elias’ safety and there is not really any difference as we don’t have nursing anyway. So it was just status quo until they could get us out.

We are happy to be home and today was a very busy day getting the new stuff the way we need it and unloading all the new supplies. Elias is loving it too! He smiled and laughed the entire car ride home. When we arrived home Elias was so amazed and happy with looking around at everything. He has especially taken an interest in our dog, Rusty. He has been watching him all evening laughing at him. It has been a joy. Well, bedtime calls. It has been a long day. We will update more later. Thank you all for the continued prayers and support. 

Its funny to think with as long as we have been in the hospital and the impending discharge date looming in limbo that things are so disorganized and frantic when the call is finally made. Having said that, yesterday was a blitz of activity beginning with the delivery, set-up and yes more training at home. We were able to get a patient attending for Elias to watch him while we were away from the hospital to do this. It took a good bit of our day, more than we anticipated. The respiratory therapist that came to the house said it was one of the smoothest set-ups he has ever done in his 20 years of experience. We took that as a compliment. After that was done we headed back to the hospital for more training. It was the final check-off boxes for our discharge requirements. We had to make Elias portable and walk him around in his stroller with all his equipment of course…yawn! We’ve been doing that for a while but did it to appease them. We also had to do the most ridiculous and in my opinion torturous thing you can do to a child. We had to demonstrate that we could put him in the care with his equipment. How cruel is it to wheel your child outside where Mom & Dad have their car you put the child in and then say…Okay now out of the car and back to your hospital room. Elias looked at us like we were crazy when we pulled him out of the car seat after 30 seconds and back in his stroller. Just have a hard time with that one even though I understand the purpose surely there is another way to do it, like a car safety inspection or something. So after proving we could get Elias in and out of the car we had to set up Elias’ home ventilator for him to use the next few days to ensure it works properly. Now that is a smart idea. The car thing not so intelligent. After setting that up since we still had a patient attending until midnight we headed back home where we had a rare opportunity to enjoy an evening with family that was visiting and staying with Katharine’s Aunt/Uncle next door to us. It was nice to have some great food, a few beers, lots of laughs and some relaxing fun even if only for a few hours! Thanks for that! We needed it!

We are very excited to leave here and get Elias home. As we said before Elias seems ready too. We had an opportunity Wednesday to take Elias to one of the Therapy playrooms. These are private areas that therapist can bring the children for therapy and a chance to escape the hospital room! Elias LOVED it. Lots of new toys to play with, but you could feel the energy he was giving off exploring the new surroundings. Can not wait to see how he is with home. He played his heart out, laughed and smiled, got excited about everything. It was such a great experience and further instilled that our decision to go ahead home is a good one. He needs this as much as we do, if not more. Continuing on that theme of therapies, his therapists have been so super impressed with Elias the last few weeks. Of course so have we. He has been amazing and accomplishing so much. His occupational therapist saw us in the hall yesterday and flagged us down. She had been in earlier in the day and she was telling us how incredible a job Elias had done. She had brought him in a simple wooden peg board. The pegs are about 2in thick and about 4in long and sit in a straight line in 1in deep holes. Elias was pulling them out and then placing them back in. Something she considered very advanced given his hand anomalies. It was she didn’t think he could do it she was simply surprised because he had not demonstrated other things she had expected to see first. Elias is also getting very good and weight bearing on his legs and when motivated with the right toy he will push up into a standing position (with lots of steadying help) and reach out for the toy. His physical therapist decided to really challenge Elias and give him a chance to really show off. He did not disappoint. She took the peg board and placed it on the parent sleep bed which was beside the mat on the floor. It is about 12 to 18 inches off the ground, so a perfect height for weight bearing and leaning. Elias saw them up there as he was doing the leg standing exercises and he leaned out to reach the pegs. Not only was he continuing to push weight all the way through his legs, but he also manages to pull a peg out as well. His therapist was super impressed because by him combining separate focuses which he is still developing and perform them simultaneously is advanced and impressive. They both are very sad to see Elias go because they have seen so much improvement from him and see so much potential. That was so great to hear. They have made some super suggestions for toys Elias could really thrive with that as they put it make great holiday gifts. We will work on a list of those a get it out to those that have already started asking. Overall, Elias has been doing well and having a great time as much as possible in the hospital. Its amazing that he can continue to develop the way he does here. We are so very thankful for that.

The plan is still to move forward with discharge next week despite the nursing situation still unchanged. There is some hope as they are interviewing 4 nurses today. Hopefully, something will come out of it. It will not be easy, but at least we will be in our own home. As I commented yesterday to Aunt Kathy as she told us to hang in there, “ We are tough cookies and while we might be crumbling a little around the edges as long as the middle stays in tacked we will be just fine. The photo we posted a few days ago is evidence of that I believe. It was very interesting and reassuring to look at that photo from the outside looking in and just see the vibrant love and happiness that is overwhelmingly apparent. Elias truly brings out the best in us!