I will begin this post with saying that we have been incredibly blessed that Landon has only been hospitalized twice now in his life. It is very rare for a child with VLCAD to have so few hospitalizations. A major part of it is that he has never been in daycare, and the other part is diligence. I am probably a borderline germaphobe when it comes to Landon. If you have been in contact with someone who has been in contact with someone who was sick, especially throwing up we will not be visiting you..sorry, it's nothing personal. The eczema on my hands is so bad from washing them constantly this winter season.
Landon was hospitalized Monday afternoon for a respiratory virus. He refused dinner except for a few bites Sunday evening, and refused his nightly snack with his meds in it. I checked his blood sugar and it was in the 80's , so I tried not to think too much about it. E woke up around 5:00 a.m. and once I got her settled back down, I went in to check on Landon. I just had a mommy gut feeling that something wasn't right. I gave him a kiss and was ON FIRE. I took his temp and it was over 102 degrees. I took his blood sugar which was 86, and gave him some motrin. I rechecked at 9:30 and he was still burning up and his temp was still way above normal so I gave him some tylenol and took his blood sugars, which were 81...again, they were fine. He refused breakfast, but had a small amount of apple juice to drink. We had to run an errand, so we packed up and headed out. I put a call in to the pedi to see their thoughts. The fever was what worried me the most, because fevers raise your metabolic rate and he was not eating and barely drinking which meant not keeping up with the raised rate.
In the store for our errand, Landon started whining and exhibiting signs that he was crashing (blood sugar wise and metabolic wise). Luckily the Pediatrician called me back at this point, and agreed that he should come in immediately. We left the store and headed straight there. His blood sugar was all over the place, it had dropped to 74 when we first got there but spiked to 94. His fever on motrin ( I had given him more on our errand because he was still burning up) was up to 104.3. He fell asleep on the exam table and was just lethargic, uninterested, and whiny and again showing signs that he was crashing. We stayed at the Pediatricians office for awhile, they did a strep test that was negative, and he still refused to eat or drink so we made the decision to admit him.
We spent 2 nights and basically 3 days in the hospital. I know we made the right decision by having him admitted. He would not eat or drink anything other than a few bites/sips until late Tuesday night. He had his D10 IV so we were not worried, and they kept a great eye on his blood sugars. Poor guy though had to have his fingers and toes priced so many times. He was petrified of his IV for the first day, as long as we kept it under his blankets. He insisted I stay in the hospital bed with him and 'snuggle with me' as he put it. He was scared and not feeling well. Sleep obviously for me was a little hard to come by, but I am so thankful that he was safe and had the peace of mind that he would get better and would not go into a metabolic crisis.
I want to say thanks to our amazing Pediatricians, they came to see Landon a couple times each day and took the time to hear what he had to say about how he was feeling. They truly are amazing and we are blessed to have found them. I am also especially grateful to an amazing nurse Landon had named Erin. She went the extra mile to make sure he was comfortable, well taken care of, and he was not scared and the pokes were as quick and as painless as they could be when we had to do them. So Erin if you are reading this, thank you so much for taking the time to learn about Landon, listen to us, and for treating him like he was your own. I also want to say thank you to the child life specialist Sarena. She was amazing in keeping Landon focused on her and not on the IV going into his arm, she let me use her ipad charger so I could stay in touch with my family (I had nothing, and we live 45 minutes from the hospital), and she took such amazing care of Landon and really made him comfortable and safe. He was way more at ease when she was there for the pokes. She even gave him an amazing batman car with batman for being so brave. So thank you so, so much to the nurses, staff, and especially Serena and Erin on D5 West, our experience was made that much better by you.
Landon was released Wednesday Night after eating and keeping his blood sugars stable on his own throughout the day. We are very happy to be home, and hope and pray it can be another 2 years (at least) before we have to have another hospital stay.
My sweet boy sleeping. The 'cast' looking thing on his arm is a cover over his IV. This pic was on Tuesday when we didn't have to have it covered all the time. He would cry and say it hurt if it wasn't covered, so heart breaking.
E came to visit Landon on Tuesday. She wanted to go for a ride in the wagon that Sarena the child life specialist let us borrow so Landon could venture out of his room. E did not want Landon to ride with her and expressing her opinion on the matter here.
My sweet guy when he was admitted on Monday. Poor thing felt awful. The nurses gave him that pillow case and he was able to bring it home with him. He calls it his 'hosipal pillow.'