Hidden Obstacles

Hi everyone, just wanted to give a quick update. We have been extremely busy with doctors appointments this week. Monday, Liam and I reported to the Lehigh Valley Hospital for a test that would check Liam's swallow function. Our little man was strapped into a booster seat with large Velcro straps, and was a complete angel through the entire test. The test was very interesting, Liam had to swallow foods and fluids with barium and on xray the doctor and speech therapist were watching to see if the food went down the correct tube. Unfortunately, the test showed that Liam is silently aspirating fluids. What this means is that when Liam is drinking, some of the fluid is entering his trachea and going into his lungs. When this happens, Liam looks completely comfortable.... there is no gagging, coughing, or choking - so one would never have any idea this was happening. The good news is that the solid foods that Liam was ingesting went down the correct tube into the stomach. When it was discovered that Liam was aspirating, the speech therapist added a thickening agent to Liam's drink so it would be easier to swallow. Once this was done it seemed that Liam had an easier time getting the fluids down the right way.

So what does all this mean?

Basically, all of us aspirate some of the time and it will not affect us... the severity of the issue depends on how much and what it is we are aspirating.... and if we are able to work it out, or cough it up.  However, for Liam these results are "abnormal." There could be several different reasons for this problem. Of course, swallow function can always be related back to neurological function. Since Liam did have a brain injury at birth a neurological deficit cannot be ruled out at this time. We have spoken to our neurologist, and she has told both mommy and daddy (more than once) that we should not be too concerned at this time because there could be many other reasons for this issue. Some of the other reasons could be immature GI tract, as well as reflux issues, and even possible unknown allergies.

What is the big concern?

We all know Liam has been getting sick frequently throughout his first year of life, and we have been told that this could possibly be the culprit. After speaking with our asthma/allergy doctor, pneumonia is a huge risk factor, as well as damage to the lungs. We are hopeful that will be able to continue to prevent aspiration until Liam is older and has better coordination, or he learns new behaviors of eating, which I will explain more about later. In addition, we have been told that Liam's wheezing and asthma may have been largely due to this aspiration.

What happens next?

Today, we met with Dr. Paul, the pediatric GI doctor at Lehigh Valley Hospital. Dr. Paul feels confident that with feeding therapy as well as speech therapy Liam will completely overcome this hurdle. Some of the things we learned were that Liam should avoid drinking out of a straw, since this makes him work harder and may be too much for him to concentrate on while breathing, chewing, drinking, etc. Liam also often fills his mouth with food to the point that he looks like a chipmunk (it is somewhat funny but at times concerning) and our doctor is assuming that Liam may have some sort of discomfort with swallowing which could be why there is a delay. Liam will be put on a trial of reflux medication to see if this will deter this eating behavior. Liam also chugs mostly every drink you put in front of him. We have been trying to break him of this habit, but it has been a challenge for us. We are hoping that feeding therapy will assist in this process.

Coming up....

In about a month we will be having what is known as a milk scan completed, in which we will for sure confirm that the thickened fluids are effective for Liam, and also this will look at some of the anatomy of his esophagus and be able to look for any reflux that might be occurring.

In the meantime we will continue with thickening Liam's fluids, and work with feeding therapy for a few months. Hopefully once Liam is a bit older the next swallow test will show that he has fought his way through yet another obstacle in his short life. Our little fighter is such a happy, healthy boy and this continues to remain our biggest focus! We are going to continue to incorporate these tests, therapies, and changes as naturally as possible, as to not interfere with the amazing, chaotic, adventures of toddlerhood : )

As for us, this was all a ton of information. I hope I summed it all up pretty well! We will keep you posted! Love to all and Happy Easter!

Latest on Liam

Hi Everyone! Liam and I had a very successful, busy day! We went to see Dr. Ververeli, an allergist through Lehigh Valley Hospital to get a second opinion. First, when we got into the office, the setting was very warm and welcoming, the office staff was kind (even though they were busy) and the toys were awesome! Even though we waited an HOUR, the wait was well worth it. This experience was completely different than our first visit with Dr. Isreal. Dr. Kathleen Ververeli (http://www.lvhn.org/find_a_doctor/profile-750) explained that Liam's previous allergy testing was most likely inaccurate - and after ONE glance at him said to me "he definitely has allergies." I explained why I wanted to see her after seeing Dr. Isreal, and she told me she loves kids- Liam and her had a great visit! Liam has had some thick green buggies the last few days, and if we don't stay on top of buggy sucking the little fellow, it can get kind of nasty (sorry if this is TMI.) Poor little man was wiping his nose and rubbing his eyes most of the visit, and this was WITH giving him his Zyrtec. Dr. Ververeli did a very thorough health history herself, which makes a very big difference to me as a nurse and a mom. We came up with a plan to increase Liam's zyrtec to twice daily and his nebulizer will be doubled in dosage as well. Liam needed to be put on an antibiotic, as we discussed that he seems to have several sinus problems and could possibly be experiencing sinus infections. I also shared that Liam had some moderate wheezing yesterday and required albuteral, and that I was very anxious about the upcoming spring. Her response was, "we can't protect his breathing, if we don't get control over his nose." Also, Dr. Ververeli agrees with my point of view that children should not live in a bubble, she told me that even if Liam was allergic to our boxer that we shouldn't get rid of our pet, but allow Liam to be exposed to her and he would gradually become desensitized (while symptoms are controlled). I know some may think this sounds crazy, however, I am allergic to grass and grew up running cross country....I really believe that eliminating all of the things that bother us is not the answer, definitely not in Liam's case anyway. At this point in time I thought to myself, we are staying with this doc - she gets it! She was happy I was a nurse because she knew I understood all of the information she was giving me... not that she would not have explained it but he was able to give me a kind of short hand version. We are still going to go forward with some more testing for Liam's immune system which will include a blood rest to rule these issues out. I was also informed that research has shown many kids with similar issues as Liam are suffering from gastric reflux, which can cause chronic coughing. Liam was treated with Zantac for a while as an infant but grew out of this, however, our doc feels it would be most beneficial to rule out any swallowing issues as well as reflux issues- so this means more blood work and tests, and possibly trialing some reflux medications in the future. I feel comfortable with the plan, and am confident we will get down to the bottom of this! I love that I was able to have a conversation with a down to earth doctor! I will let you know more when we have some info!

Next we went on to see Dr. "V" for Liam's 15 month well visit! I explained the plan for Liam's allergy and asthma treatment and he was completely on board. Apparently I am not the first parent to complain about Dr. Isreal, Not surprising! Dr. V feels Liam's issues with sleeping through the night are due to the  introduction of nightmares at this age, which is completely normal. Liam was still able to get his 15 month vaccines, which included a very exhausted toddler and lots of screaming, Liam could barely stand up by this point since he had not had a nap. We reviewed Liam's milestones, and discussed his progression with speech therapy. Liam's next appointment will hopefully *fingers crossed* be in three months.

We were able to get our little guy out to see the Easter bunny this weekend and also to the park. Liam's personality is just.....well I guess awesome is the only way to describe it. He is SO well behaved, smart and strong! I just don't know what we would do without him. I am loving every minute, and trying to take it all in before another phase begins.

Today was a very long day for both of us since Liam did not nap and decided to stay up until 8pm, so I apologize in advance for any silly punctuation or other nonsense!!! Until next time, hope everyone soaks up some lovely rays, and enjoys Easter!!! Love to all!

Toddlerhood: the age of injury

Hi everyone !! We have been super busy lately, when you have a toddler it seems like you are constantly running, wait ... You ARE constantly running ... After them! Liam seems to have become a track star and our living room is where he does he laps, I absolutely love it! The strength and will of our little man makes my heart melt- he is very "strong willed" and when he wants something he just won't give up! Our gate at the bottom of the stairs has become a contraption for him to hang from, his crib has become a new climbing adventure, and we finally have gotten outside! Liam has been playing in the window for months, and the look of awe on his face when we take him outside makes me so happy! I am loving how much his stage of exploration is satisfying him, and I want to let him get in as many adventures as possible- so happy the weather has started to cooperate! Unfortunately, with this amazing phase of inquiry in his little mind, there is always danger looming. The other morning I was attempting to empty the dishwasher and Liam thought it would be fun to play with the silverware basket.... Which I thought was cute until he went running and began sliding the basket on the floor- and not long after the basket got caught and Liam's momentum kept going.. Somehow he slammed his mouth on the edge of the basket. Oh, the screaming and mouthful of blood was so painful- I have been around blood plenty as a nurse, but now it's different with the screaming coming from my soon to be 15 month old. As a mommy you want to kiss the injury away- but I know these things are important parts of his "growing up" and I am trying to take them in stride. Liam has now had about 3 fat lips in the past week, and he hasn't been much interested in food not that I can blame him, which leads then to him not sleeping well. I don't see this phase slowing down, in fact I am sure we are just gearing up!!! This weekend we attended the Lauren's hope butterfly ball and it reinforced how lucky we are to have our little miracle and  couldn't be more blessed!!!! Love to all!!!