Aack. So I take a few days off from blogging and now I have too much to report. The sun is shining and I am just chomping at the bit for Liam to finish his nap so that we can go outside and play. Initially I had a great plan involving kite flying planned for the afternoon (inspired by this thoughtful and fun blog post.) but failed to plan ahead and get the necessary equipment. Namely, the kite itself. I'd love to run out and buy one now but I promised Karin that she could nap while he napped so I don't want to bother her. Ah well, the warm weather is just starting and there will be other days for high flying fun. I suspect we'll go walking around the graveyard again as soon as Liam wakes up.
We all had a very nice weekend. On Saturday I was asked to take part in my cousin's Eagle Scout Court of Honor which made me very proud and gave me a chance to hang out with my dad for a few hours during the 2 hour drive out to Springfield. It's the farthest from Liam I have ever been since he was born. As we got about 45 minutes away, I started to get a very uneasy and unsettled feeling in the pit of my stomach. Even while I am at work I am only minutes away and can rush home to help in case of any emergency. Not really the case when you start getting further and further away. At about the hour and a half mark a realization washed over me that at that point no matter what happened Liam and his Mom would be on their own. No matter how serious, there was nothing that I would be able to do to help the situation. I usually get very frustrated when there is something that I can't help with. I'm a fixer. I need to be able to control the situation. Even when we had to call 911 to take Liam to the hospital last October I was telling each of the EMT's what to do and where to go, a situation I'm sure they appreciated by the eye rolling and attitude I received. There is only one other person on this earth who knows how to take care of any emergency with Liam. That is of course, his mom. Liam has seen dozens of doctors and easily more than a hundred different nurses in his short lifetime but unless we are talking about major surgery only is mom and I can take care of him. At the point of no return I realized that it was all up to Mom. She would have to do it without me, and somehow that calmed me. Since there was nothing I could do from so far away it freed me up to simply enjoy the afternoon. Had I been closer to home I would have been constantly thinking about rushing home to help out but in this case I could just enjoy the ceremony.
After about 4 hours though, that sense of calm wore off and it was time to get home as quick as I could. I missed him and being so far away started to again weigh me down. It can be frustrating that Karin and I cannot simply call over a babysitter and take off for a few hours together but I don't think either of us really want that to happen. The only way that either of us can be comfortable leaving him at all is when we know that the other is with him. While I did have a fun afternoon that day I think I'll be staying somewhat closer to Liam for the foreseeable future.
On Sunday Karin's parents came up from NJ for a visit and we all had a great day of watching college basketball while Grammy and Opa took turns holding Liam. Hopefully sometime over the summer Karin and I will be able to work out some kind of arrangement with our oxygen supplier to make a short visit down to New Jersey so that Liam can meet his cousin and visit his grandparent's house. We'll see.
Monday was marked by an appointment with Liam's Neurologist that went exceptionally well. Karin and I are unbelievably lucky that we have been able to surround Liam with some of the best and brightest specialists in the northeast. Dr. G. is a leader in his field with a specialty in the same brain disorder that Liam is diagnosed with. Liam did very well at the appointment behaving very well for his neurological exam and showing Dr. G. how much progress he has made. After the appointment was over Liam and Karin walked over to my office to meet some of my staff and co-workers who have waited so patiently to meet the baby they have heard so much about.
Yesterday was a day of rest and then today we had another appointment with a whole other set of doctors and a hearing assessment that was inconclusive. Gotta love putting your kid through a whole bunch of uncomfortable positions only to be told that no results were gotten. Awesome. In true Liam fashion we'll have to go for a bunch more tests including another hearing test that he'll be sedated for. We have a couple of procedures upcoming so we are trying to have two of them done at once t minimize how many times he needs to go under anesthesia. Coordinating doctors though is just a bit more difficult than herding cats though so I'm not holding my breath.
Well Liam has woken up and needs a change. Once I get that done its time for this boy to get a healthy dose of vitamin D. The beautiful weather outside is calling and he's been couped up in this house for far too many months. Happy St. Patrick's Day everyone, now go out and enjoy the weather before I beat you with my shillelagh.
Showing posts with label Doctors. Show all posts
Showing posts with label Doctors. Show all posts
Wednesday, March 17, 2010
Wednesday, March 3, 2010
And what a voice it is.
The three of us just returned from Liam's VIP clinic appointment. Although Liam is a very important person the initials in this case refer to the Ventilator Integration Program. We meet with a number of Liam's services at once here and it makes it much easier than having to visit them all in separate appointments. Today it was his pulmonologist, a pediatrician who is following Liam's case (though is not Liam's "pediatrician" proper) a speech pathologist and his neurologist. Liam did great.
The appointment went very smoothly and there are no major changes to his care but we were able to take a very encouraging and exciting step forward today. We got to hear Liam's voice again! The first time since he had his trach put in last July. The trach that Liam wears has what's called a cuff that inflates to fully block his airway from air escaping during both inhalation and exhalation. Today we deflated his cuff which opens up the space around the trach tube to airflow, thereby letting air pass by his vocal chords again. Its the first step towards using a speech valve in his ventilator tube which would let him use his voice more often but for today it was just a trial to ensure that his lungs could handle the extra work of staying inflated on their own. He passed with flying colors. He gave us a groan to let us know he still had a voice.
The whole process will take a few months before we get a schedule to wear his speech valve but today was a great first step.
I wasn't planning on this post being much more than a quick wave hello while I wait for Karin to get back from the gym; But I do have pictures from yesterday when we took a family trip to the zoo! We saw animals from all over the world. Liam's favorite?? The geese found outside the zoo in the parking lot. That kid of mine.
The appointment went very smoothly and there are no major changes to his care but we were able to take a very encouraging and exciting step forward today. We got to hear Liam's voice again! The first time since he had his trach put in last July. The trach that Liam wears has what's called a cuff that inflates to fully block his airway from air escaping during both inhalation and exhalation. Today we deflated his cuff which opens up the space around the trach tube to airflow, thereby letting air pass by his vocal chords again. Its the first step towards using a speech valve in his ventilator tube which would let him use his voice more often but for today it was just a trial to ensure that his lungs could handle the extra work of staying inflated on their own. He passed with flying colors. He gave us a groan to let us know he still had a voice.
The whole process will take a few months before we get a schedule to wear his speech valve but today was a great first step.
I wasn't planning on this post being much more than a quick wave hello while I wait for Karin to get back from the gym; But I do have pictures from yesterday when we took a family trip to the zoo! We saw animals from all over the world. Liam's favorite?? The geese found outside the zoo in the parking lot. That kid of mine.
Wednesday, January 20, 2010
Its all about Liam.
I'm blogging earlier than usual today as Karin is at the gym and I am up to answer any questions for our new nurse who just started. The first day with a new nurse is always a bit of work to put together. They need to get to know Liam. They need to get to know us. More importantly we need to get to know them and whether or not they will be a good fit for our family. These people are in our home; having a nursing degree and some experience is not enough to ensure that they'll work out.
So far so good with this nurse. She seems knowledgeable and pleasant enough. One concern is that she is allergic to cats. I can't tell you how many times we have told the agency about our cats but nurses who are trained to handle trach and vents aren't all that common and sometimes we have to take what we can get.
Our usual daytime nurse needed to take some time off which Karin and I can completely understand. It will take some time before we can both leave the house or sleep late again. Hopefully this new nurse will catch on quickly and Liam will like her and we can get back to planning our mornings to include running errands and going to the gym together. We'll see. Liam hasn't woken up yet so we aren't even sure how he will respond to her. I think he'll like her but we'll see.
He had to get his 12 month immunizations and so got 3 shots all at once and then needed a blood draw to check a CBC and Electrolytes. My boy is one tough cookie because he took all those needles like a champ. HE even fell asleep as the lab techs in the office hemmed and hawed over where oh where to stick him for the blood work. They were so distraught made worse by the fact that when they asked where he would get blood work when in the hospital Karin told them that he had to have a central line put in by a surgeon. They were not happy to hear that. They did their jobs well though because since they took so long t find just the right spot once they did stick him they were able to get everything they needed rather than be forced to make multiple attempts.
After his appointment we all came home and since I had the day off from work we were all able to take a nap in the living room together. Wonderful Quiet. It was a wonderful day. There truly is nothing better than taking a nap with the boy.
So there you have it. Liam has had an exciting couple of days and is still sleeping as we speak. It is possible though that he is playing possum and pretending to sleep because he doesn't know the strange older woman sitting next to his crib. He does that sometimes, hoping that if he doesn't open his eyes the strange woman will just go away. No such luck buddy, her shift ends at 2pm.
So far so good with this nurse. She seems knowledgeable and pleasant enough. One concern is that she is allergic to cats. I can't tell you how many times we have told the agency about our cats but nurses who are trained to handle trach and vents aren't all that common and sometimes we have to take what we can get.
Our usual daytime nurse needed to take some time off which Karin and I can completely understand. It will take some time before we can both leave the house or sleep late again. Hopefully this new nurse will catch on quickly and Liam will like her and we can get back to planning our mornings to include running errands and going to the gym together. We'll see. Liam hasn't woken up yet so we aren't even sure how he will respond to her. I think he'll like her but we'll see.
Liam did great at his pediatrician's appointment yesterday. To get all the dirty details out of the way he is now weighing in at a lean 21lbs 7oz and 27inches long. He is now officially, and for the first time in his life, tracking along the growth curve. Gone is the ever increasing chunkiness he's now a lean mean pooping machine. We discontinued one of his GI meds and are on our way to getting rid of another in the next month. Yay! 
Liam and his daddy at the Doctor's office.
Liam and his daddy at the Doctor's office.
He had to get his 12 month immunizations and so got 3 shots all at once and then needed a blood draw to check a CBC and Electrolytes. My boy is one tough cookie because he took all those needles like a champ. HE even fell asleep as the lab techs in the office hemmed and hawed over where oh where to stick him for the blood work. They were so distraught made worse by the fact that when they asked where he would get blood work when in the hospital Karin told them that he had to have a central line put in by a surgeon. They were not happy to hear that. They did their jobs well though because since they took so long t find just the right spot once they did stick him they were able to get everything they needed rather than be forced to make multiple attempts.
After his appointment we all came home and since I had the day off from work we were all able to take a nap in the living room together. Wonderful Quiet. It was a wonderful day. There truly is nothing better than taking a nap with the boy.
So there you have it. Liam has had an exciting couple of days and is still sleeping as we speak. It is possible though that he is playing possum and pretending to sleep because he doesn't know the strange older woman sitting next to his crib. He does that sometimes, hoping that if he doesn't open his eyes the strange woman will just go away. No such luck buddy, her shift ends at 2pm.
Saturday, November 21, 2009
All seizures all the time!
It's been an extremely long week. I will try to recap...
Monday -- Liam has his longest and most severe seizure needing Diastat to break him out of it. We also notice that his seizure activities were starting to change. Rather than one strong event these were looking like a cluster of many, many short seizures over 15 to 20 minutes. I mention to Karin that this must be infantile spasms. A common type of seizure for kids with Liam's syndrome.
Tuesday -- A few more seizures that seem to upset Liam more. Neurology contacted but not much they can do until we see the doctor on Wednesday morning. In wonderful timing on Liam's part the appointment was made months ago. Also Karin gets deeper and deeper into a battle with the insurance company over a very, very important drug that we were already told would be covered but now they're dragging their feet.
Wednesday -- Doctor's appointments in the morning. First with pulmonology who were very happy with Liam's progress. No changes to vent settings. Then with Neurology who spent almost an hour talking with us about the seizures. He diagnosed the small clusters as infantile spasms pending an EEG for Thursday. The treatment will involve many eye exams in Boston to watch for a side effect that can damage the eyes. Liam's eyes are already damaged enough but the other treatment's side effects are even worse and the decision was a no-brainer. In the afternoon Karin continues her battle with insurance as they continue to drag their feet on a treatment that could potentially leave Liam susceptible to a life threatening illness. I'll get into why you're wrong if you're against health care reform in a later post, this post is supposed to be about Liam.
Thursday -- Get the whole family out the door bright and early to get to the hospital at 7:30am. EEG nurses are friendly and efficient and we are quickly processed and they fix the sensors to Liam's scalp. The test can last as long as 6 hours but we were hoping that Liam would help a little by showing us everything we needed to see. He did. He stayed awake for about twenty minutes, he slept for about twenty minutes and then he had one of his seizures for about twenty minutes. After it was through the nurses said they had everything we needed and sent us home. Liam was tired and slept most of the day. He has been sleeping most days this week as the seizures have taken a lot out of him. It has been difficult but we (mostly Mom while I'm at work) have done a good job of making sure he does all his physical therapy each afternoon. More phone calls to insurance companies, doctors offices, and pharmacies. Being Liam's Secretary is a full time job in itself.
Friday -- The doctor calls to tell us that the EEG results confirm his (and my) diagnosis and we need to get into his office quickly to sign all the paperwork to start treatment. Karin drops me off at work and heads there while we have the nurse in the morning. Liam is having more spasms but they seem to be less intense. We all hope that the treatment we have chosen works and works fast. The insurance company officially says no to the other treatment I mentioned. There are no alternatives and it is a med that Liam must have. It costs a little over $2000 dollars a month but luckily the state will be picking up the tab. Because Liam was born so small he qualifies for state aide which is the only way this family would survive. All companies and offices called and confirmed and we should have the med soon. Hopefully by Monday.
Through all that we also had our non-Liam stresses and obstacles. Sleep has been scarce and we haven't been eating well or exercising. My work sucks and I haven't done much reading and even less writing. Through it all, Liam has given us both so many smiles, hugs, and kisses. In one glance Liam can make all the headaches, the frustration and the aggravation melt away and be forgotten. Without him in our lives we may have a bit more free time and a little less stress but I wouldn't trade it for the world. Its truly a small price to pay for the joy that Liam brings to my heart each and every time I see him, hold him, or even think of him.
Posting to (hopefully) resume a somewhat consistent schedule. The In-laws visit tomorrow and I'm hearing good things about the weather. Things are looking up!
Monday -- Liam has his longest and most severe seizure needing Diastat to break him out of it. We also notice that his seizure activities were starting to change. Rather than one strong event these were looking like a cluster of many, many short seizures over 15 to 20 minutes. I mention to Karin that this must be infantile spasms. A common type of seizure for kids with Liam's syndrome.
Tuesday -- A few more seizures that seem to upset Liam more. Neurology contacted but not much they can do until we see the doctor on Wednesday morning. In wonderful timing on Liam's part the appointment was made months ago. Also Karin gets deeper and deeper into a battle with the insurance company over a very, very important drug that we were already told would be covered but now they're dragging their feet.
Wednesday -- Doctor's appointments in the morning. First with pulmonology who were very happy with Liam's progress. No changes to vent settings. Then with Neurology who spent almost an hour talking with us about the seizures. He diagnosed the small clusters as infantile spasms pending an EEG for Thursday. The treatment will involve many eye exams in Boston to watch for a side effect that can damage the eyes. Liam's eyes are already damaged enough but the other treatment's side effects are even worse and the decision was a no-brainer. In the afternoon Karin continues her battle with insurance as they continue to drag their feet on a treatment that could potentially leave Liam susceptible to a life threatening illness. I'll get into why you're wrong if you're against health care reform in a later post, this post is supposed to be about Liam.
Thursday -- Get the whole family out the door bright and early to get to the hospital at 7:30am. EEG nurses are friendly and efficient and we are quickly processed and they fix the sensors to Liam's scalp. The test can last as long as 6 hours but we were hoping that Liam would help a little by showing us everything we needed to see. He did. He stayed awake for about twenty minutes, he slept for about twenty minutes and then he had one of his seizures for about twenty minutes. After it was through the nurses said they had everything we needed and sent us home. Liam was tired and slept most of the day. He has been sleeping most days this week as the seizures have taken a lot out of him. It has been difficult but we (mostly Mom while I'm at work) have done a good job of making sure he does all his physical therapy each afternoon. More phone calls to insurance companies, doctors offices, and pharmacies. Being Liam's Secretary is a full time job in itself.
Friday -- The doctor calls to tell us that the EEG results confirm his (and my) diagnosis and we need to get into his office quickly to sign all the paperwork to start treatment. Karin drops me off at work and heads there while we have the nurse in the morning. Liam is having more spasms but they seem to be less intense. We all hope that the treatment we have chosen works and works fast. The insurance company officially says no to the other treatment I mentioned. There are no alternatives and it is a med that Liam must have. It costs a little over $2000 dollars a month but luckily the state will be picking up the tab. Because Liam was born so small he qualifies for state aide which is the only way this family would survive. All companies and offices called and confirmed and we should have the med soon. Hopefully by Monday.
Through all that we also had our non-Liam stresses and obstacles. Sleep has been scarce and we haven't been eating well or exercising. My work sucks and I haven't done much reading and even less writing. Through it all, Liam has given us both so many smiles, hugs, and kisses. In one glance Liam can make all the headaches, the frustration and the aggravation melt away and be forgotten. Without him in our lives we may have a bit more free time and a little less stress but I wouldn't trade it for the world. Its truly a small price to pay for the joy that Liam brings to my heart each and every time I see him, hold him, or even think of him.
Posting to (hopefully) resume a somewhat consistent schedule. The In-laws visit tomorrow and I'm hearing good things about the weather. Things are looking up!
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