It Has Been A While

From Halloween 2010

Halloween 2010

Elias took advantage of Halloween to give Daddy a scare. He had been having an off day yesterday. He seemed more tired than usual and a bit moody, so we were already more watchful. While napping his head began to shake and his eyebrows moved up and down rapidly. Within seconds his head was shaking faster. Initially my heart sank, another seizure. I quickly began trying to wake him, with a single toggle his eyes opened I put my hands on his shaking head and it stopped. Thank God. Had it been a seizure it would have kept going. He did seem to have a bit of a headache so we gave some Tylenol. He began to feel a little better shortly afterward. We were thankful it wasn't another seizure and feel like he was feeling a really bad headache or migraine in his sleep. The head shaking was just him trying to soothe himself some. Unfortunately, headaches and migraines have become increasingly common. They are a side effect of his IVIG as well as a new normal, as we are told with the seizure problem. Neurology told us two things in his last visit with them. First, he is more prone to have seizures when he is asleep and potentially when sick. Second, we need to lower our threshold on giving Tylenol. Since Elias is non-verbal, while his communication has improved headaches are often disguised and difficult to read. We are all getting better learning the subtle cues. It is a process that we are constantly making progress. Needless to say there was no dress-up or trick or treating for Elias. We had not planned on the trick or treating anyway. First, he can't be out that much and second he can't eat by mouth anyway. Finally, being non-verbal and not hearing he has no understanding of what the heck holidays are anyway. Last year we sat outside for about 15 minutes with him so he could see the other kids dressed up. He didn't seem to care too much, hahaha. Just FYI he still fits in his Halloween costume from last year!


It has been so long since we have been able to update. It just seems to be getting more and more difficult. Time has been a premium and we have been in a survival mode with the loss of night nursing over the past few months. We have had to juggle staying up all night and then struggle not being able to sleep with appointments and therapy during the day. After 7 weeks we finally have some coverage, but staffing continues to be a problem and seemingly impossible for the agency. Unfortunately there is no alternative, they are still the only agency accepting vent patients. Our advocacy woes with them continue and their incompetence shows daily, but what can we do? We have caught them yet again in an outright lie about how diligently they are working on the case, but they don't care and there is nothing we can do. Unfortunately Elias care needs have intensified overnight and is much more critical with the seizure risk protocol. These are the doctors words, not ours and we are working with her to try and enlist her help in pressuring the agency over Elias safety. We have to try, but not expecting it to work. They have a mind set and it has not swayed in the almost 2 years we have been with them. The excuses are the same, yet there is no action on their part in an attempt to change and improve the issue. Instead they are content with being passive and using the same excuses repeatedly, yet contradicting themselves by telling parents 'we don't hire nurses unless they can work nights and weekends.' If this were true then we do not understand how there can be a problem staffing weekends and nights. The nurses that are working here have never been told they "HAVE" to work weekends, they were given a choice. When they said no, the agency did not push. They simply said 'okay.'  I'm going to stop there I don't want to get into a rant. Just know it is growing tiresome and it is frustrating knowing you are helpless to change the situation and at the mercy of a failing system. We are not the only family like this. We know countless families in and out of the area experiencing similar issues. While that makes us feel a little better knowing it is not just us demanding too much, it is sad that no one is raising a red flag for such a widespread issue.

Preschool - the past two months have, as expected been a learning experience. As we mentioned in the
previous paragraph and post with the look of our calendar the schedule is packed! We knew it would be busy and it hasn't disappointed. It would be more manageable if we were up 24 - 36 hours at a time. We have managed quite well all things considered. A lot of daily chores and cleaning has been sacrificed, focusing on the priorities, but that is what you have to do when you face challenges. The biggest issue has been scheduling. They all want to come at the same time or limit the days they can come. Again we are working through this and are making progress. We have definitely learned a few things that we will be asking to avoid next year and will fight to write it in his IEP next year. The biggest issue is the co-treats. While these are effective periodically between 2 disciplines, every time is over kill and ineffective. OT & PT especially. They often are competing for Elias attention when they both are here. They each have very different focuses and while they claim to do this often it is not working for Elias. He ends up running away from them and standing in a corner. It stresses him out a bit and very overwhelming to have someone work with you and then suddenly another person pops in the picture trying to make you do something different. You can see it in his face. We have addressed this and they disagree with our assessment. A few weeks ago the PT was forced to come out alone and she commented how engaging,  productive, and focused Elias was. We took that opportunity to stress our point again, but it was brushed aside it seems. The argument we are presenting now is that he is approved to have two 45 minute sessions of each, PT and OT. By co-treating he is being cheated out of time, given that each of them is battling for his attention. It is comical to watch, but the reality is it is not effective. We can't believe that no other parent has ever brought this up. He is only getting 90 minute session with both simultaneously with the focus is back and forth. Not the 180 (45 x 4) That is not giving him the time he needs, or any patient for that matter. He is likely not going to reach his goals on his IEP due to this and while it is a set back for Elias, it just may help strengthen our advocating point.

Elias development overall has been incredible. His communication is constantly improving, expanding and evolving. Gesturing and him physically taking us to an item he is requesting has become a knew favorite form of communication. Just like we use different methods to request things, he too is learning to choose from the various tools - picture exchange, gestures, signing - for what he wants. It is amazing to watch. His joint attention is also becoming more purposeful. We are beginning to work on getting him to understand that we also need to have the ability to decide when something is all done or finished. Not an easy task when you have no ability to explain why you need to stop and activity. He simply sees it as done. Impressively he has grasped the concept surprisingly well given that barrier. He reacts appropriately with mild tantrums or displays of displeasure consistent with a 'typical child'. His independent play has never been  a problem, and we are seeing continued growth in this area as well. Baby is a word he says quite often and he also says something that resembles bubbles. Bubbles of course being one of his favorite activities and one of the most motivating tools we have in teaching.  His saying these two words along with many sounds (ah, a, b, ch, du, da, eg, j ,la, lu, m) tells us that the listening therapy (Aural Rehab) is now showing dividends. We have some recordings that we are trying to put together to post. We have been doing AR for over a year and a half and the progress has been questioned more by the providers than us, but it has been reminded that this is going to be a slow long process. Once we all focus back on that point and see these things, most of which he has just started in the past few weeks it is reassuring and promising. It may take five years but if we continue to do the things we do and work fervently there is hope he will hear and even verbalize. That is truly a blessing and melts away the stress, mental and physical exhaustion. Elias continues to make us proud and thrive beyond expectations his medical limitations should have. There is a great deal more that we could share, as so much has been going on. These have been the key points. As always we keep on pushing. Thanks for your patience, your thoughts, and your prayers.

Much Improved

Elias has improved since our last update. Thank you all for your  thoughts and concerns. His pulmonologist wasn’t certain if what we had was viral or not. We had already started Ciprodex over the weekend which he felt was the best thing to continue, unless it was viral. If there was not any improvement by Tuesday morning then we would need to do something different. Fortunately, there was improvement and he has continued to improve today.

How Much Can I Cram in One Week?

Fire the idiot that does our scheduling! Oh wait, that’s me! What was I thinking? How much can we cram in on one week? I have no idea how I managed our schedule to get so out of control this week. Well this week has been a very hectic one. Elias had Speech, Occupational, Physical and Aural Rehab Therapies through the week. We also had IVIG Friday and of course, what is a week without a new problem or issue to contend with? Not to mention Katharine having to work an overnight shift at work, and having some doctor appointments of he own and I had a meeting with our nursing agency case manager. We are very glad this week is behind us, but the schedule doesn’t seem to be getting less chaotic anytime soon.

A Week of “New”

 

Elias has an odor from his trach tube. That is never a good thing and usually an early indicator of something bad. However and thankfully he was presenting with none of the other usual suspects of symptoms. We still felt the need to contact Dr. Wood, Elias’ pulmonologist. Our thought was possibly that the pseudomonas he is colonized with might be flaring up. Dr. Wood agreed, but since there were no other symptoms it wasn’t worth doing a culture. We would just treat this presumptuously, as Dr. Wood put it, because Elias can not be trusted! Especially when it comes to that tenuous airway, again his words. Elias amuses him and challenges him at the same time and he has told us on many occasion that he sleeps better knowing we are his parents. We appreciated that compliment coming from one of the worlds top pulmonary doctors very much! So we are giving him Gentamicin for the next 10 days in hopes that this clears up the issue.   

Medicaid & Private Nursing Update

Image by jpstanley via Flickr

 

 

We are still waiting  to  speak with the cardiac surgeon. I have decided to be patient through today, then I will start pressing. I thought now would be a good time to update the Medicaid and Nursing situation. We finally got Elias Medicaid card in the mail yesterday. I called the case manager to see if we could retro-cover anything. She did not have the information yet. There is a lag between the issue of the card and the letter of approval to enlist service providers. Apparently, they do not expect parents to be on top of their game and start making calls so quickly. Not us , we do not play around, we have been waiting for this card for three months now. We need to get this ball rolling so that we can start to afford all these new medical bills that are rolling in. She did explain that under the program we have been approved we only get 50 hours of nursing every six months. The program we would need to be a part of is for medically fragile children. We have received spotty and inconsistent information on this program up to know and it is not becoming much clearer. What is crystal clear is that he case manager was not optimistic about things. She told us that we would clearly qualify and that is not an issue. What is problematic is that out of five agencies that could facilitate care four of them have refused to accept Elias. The fifth one has agreed to take Elias on as a client, but there is not a guarantee they will have anyone to staff the case. Apparently this program is very limited in its nursing and without knowing much about our new state’s system, based on our previous experience I would be willing to bet it has to do with a lower rate of pay these cases receive. So at this point we are waiting to talk to the agency directly about this to find out how all this truly impacts us, positive or negative. Unfortunately, while we have received the Medicaid card itself, the state is lagging behind issuing letters of authorization to begin services. That seems sort of like getting your drivers licenses before you take the driving test. Oh it is so great to be battling the state again! We will keep you posted on how this plays out.