Spring break has finally arrived for us at the Shrader house and I’ve finally been able to catch up on the things I’ve been putting off for the past 2 months. Among the many things that have been laid aside while I focused on school has been updating you all on Landon’s condition and events going on in his life. It has been an eventful time, as always, so this will be a lengthy update and I’m sure I will still omit things.
To pick up relatively near where I last finished in late December, we finally had the opportunity to celebrate Christmas with our families over New Year’s. Travelling with Landon poses its unique challenges and so any trips we make now are planned far in advance and usually for an extended stay. We were fortunate to have 5 days to spend in Nebraska before we returned home for Karen to go back to work. Additionally, I had an abbreviated winter break this year and started classes on January 8. By starting the semester 2 weeks early, we are able to have 3rd year finals earlier and start my clinical rotations on May 12th. As of right now, I am 406 days away from being a graduated veterinarian, which seems like a very long time but I’m sure will go by quickly.
Shortly after the New Year our nurse Hannah informed us that she had been offered a job at a hospital in Junction City that she would be taking. Karen and I were incredibly disappointed because she was wonderful with Landon and was the only other person (other than Karen and myself) whose voice he recognized. However, what is best for us is certainly what is not what is best for everyone else and the improved benefits and room for advancement were just too great an opportunity for her to pass up. Fortunately, Hannah is still excited to babysit for us when need be so she can still get her fill of Landon time and he gets to hear from his best friend.
With the news of Hannah’s departure, Karen and I were left to search for a new nurse. This posed a more significant challenge this time around and has caused us continual problems since. Despite hours we thought were reasonable (10:30-6:30 M-F), no nurses through the agency we used were both capable of caring for him and available during those hours. Due to Landon’s disability, we are provided access to a nursing agency from which we are supposed to interview and select a nurse. We eventually were placed with a nurse who could accommodate most of the hours we required but who has missed a significant amount of work due to being in the late stages of her own pregnancy. We have recently decided to fire our current agency and explore others in order to find a situation that better fits Landon’s needs.
Part of the difficulty in finding a capable nurse for Landon is the level of physical effort required to care for him. Manipulating a 22 lb baby in order to clear his lungs when he chokes, lifting and swinging him to calm him, and holding him nearly all day to comfort him is seriously physically demanding. Landon has nearly outgrown Karen’s ability to lift him out of the crib or to flip him quickly to his stomach or side if he begins to choke. Because he is unable to assist us in any way, he is essentially dead weight when picking him up to change a diaper, clothes, or provide emergency medical care. We are fortunate to both be very young and able to recover quickly from physically exhausting days.
In February, Landon had a serious deterioration in health. In the middle of the night, Landon suffered a grand mal seizure. Early in the afternoon the next day, Landon had vomit that was tinged with blood. We watched him very closely and he recovered a bit but he still seemed very tired and weak. He wasn’t able to maintain his temperature either, fluctuating wildly between 102 and 92 degrees. The next day we noticed blood in Landon’s stomach again, prompting us to take him to the emergency room. Doctors there were unable to draw blood from him so they performed a ‘heel stick,’ drawing blood from a poke to his heel instead of from a vein. The results from the blood test were very worrisome, as Landon only had a hemoglobin level of under 5. This is extremely anemic as normal for his age should be between 10 and 13. This test measures his blood’s ability to take oxygen around his body.
The extremely low value on this test prompted us to drive Landon to Kanas City to Children’s Mercy Hospital. Even after driving in a car with the heat on full blast and Landon wrapped in warm clothes and layers of blankets, his temperature was only 91 degrees when we arrived at the hospital and falling. He had so little blood volume, even the specialized nurses at Children’s Mercy struggled to place and IV. He was placed in an incubator to raise his core temperature and was administered warm fluids. The night was a little harrowing but by early morning he was stable enough for me to feel comfortable driving back to Manhattan for class.
When I made it back to Kansas City that evening, Karen informed me that they had performed a reticulocyte count for Landon. Reticulocytes are the precursors to red blood cells. When your body doesn’t have enough red blood cells, your bone marrow should respond by making more and the overall population of cells should be younger. Normal levels in an infant should be between 2 and 6 percent and that number should rise significantly in an anemic baby. Despite being very anemic, Landon’s reticulocyte count was .5%. We agreed to a blood transfusion and waited for test results as to why his count was so low. Doctors determined that his bone marrow was not producing red cells anymore. We aren’t sure if this is due to a neurologic dysfunction or inability of his gut to absorb nutrients but the end result is essentially the same. If his body does not respond, he will slowly become more and more anemic until he becomes weak and passes away. The reality of this is that transfused red blood cells only survive for 60-90 days and we are predicting that 2-3 months from now we will see a decline in Landon’s health.
Landon was released to come home with us after a week of being hospitalized. After we were settled back at home, we contacted hospice care to help us make Landon more comfortable during his time at home. We started him on several new medications as well, including Clonidine (a sleep aid and helps with headaches and tremors), ranitidine (an antacid in Zantac), and Oxycodone (for pain control). He gets visits from nurses once or twice per week to help check on him but has otherwise stopped going to doctor appointments. If anything urgent comes up, hospice is also able to arrange for home visits from the doctor which will be a great help.
Recently, Landon has had a tooth erupt. Unfortunately, he is unable to feel his tongue and has started to erode the bottom of his tongue on the tooth edge. The wound he has created is very deep; almost half the full thickness of his tongue. Of concern is that he will rupture a large lingual vein or artery and have significant bleeding. With an already reduced ability to replace red blood cells, losing lots of blood from his tongue is obviously dangerous from that aspect, as well as a choking hazard. We have consulted with a pediatric dentist in town and may be able to get silicone caps glued to the tops of his teeth as they erupt to minimize the damage he does to his tongue.
The greatest risk to his tongue occurs when he has seizures, which we have seen a significant number of recently. As I’ve mentioned before, Landon holds his breath when he cries. This breath holding triggers him to seize and bite his tongue. More importantly, he sometimes goes into cluster seizures, having multiple powerful seizures in close succession. In the case of a cluster seizure, without early intervention, Landon could go into a constant seizure that doesn’t stop and can be fatal. This condition is called status epilepticus. To prevent this from happening we use a drug called diazepam as a suppository to halt his seizures. This past weekend Landon had 2 cluster seizures in 3 days, expending our store of diazepam. We were able to get another drug called lorazepam on short notice until a new delivery of diazepam can arrive.
On the whole, Karen and I are doing pretty well. Nights can get long sometimes and it is always stressful to have a very sick baby to listen for but we manage. Every day is a mix of trying to enjoy ourselves a little bit and still do what we have to do for work, school, and Landon. We are having family pictures this weekend to celebrate Landon’s first birthday which will be on April 16. We were told 1 year was all we would have and based on our experience so far, I think it has taken several miracles, hard work, and dedication from lots of people to reach this point. Every day we get with Landon is a blessing and we are still just trying to pack as much love as possible into the time we have with him.
“Strength and growth come only through continuous effort and struggle.” – Napoleon Hill