Wow, I hadn't realized I haven't updated this page since the day Liam came home. It's crazy how fast time flies. Bringing him home was nerve-wracking to say the least. Most people think monitors give you peace of mind, but they don't. The screeching sound of an apnea monitor in the middle of a silent night is none too relaxing but we made it through. We struggled initially with feedings, as we did in the NICU. Slowly, but surely, the bradys got to be less and less. At our appointment with Dr. Rising (the sleep apnea specialist), on June 14, Liam had had no true apneas, so his apnea monitor was discontinued and he was put on a pulse-oximeter (which measures pulse and the % of oxygen in his blood). Things were going well until June 20. He had multiple cyanotic episodes (cyanotic = turning blue) and desats so we took him to the doctor and learned his iron was low again. On June 21, he was admitted back to the hospital - this time to ICU in Lebanon with a plan to receive a blood transfusion. After discharge, another iron level was done which showed his iron to be slightly higher than the day before so they didn't do a blood transfusion. They did a repeat echocardiogram, looked at his phenobarbital levels, and monitored him. The echo and phenobarb levels were fine. He was discharged on June 22 on Caffeine with the suspicion that he was having apneas.
Again, things were going well. We have been weaning oxygen - but waffling back and forth between oxygen and no oxygen and not going more than a couple days without it. On July 12, Liam had another cyanotic episode. This one was slightly different in that his heartrate was over 220 and he was lethargic. The episode lasted a couple minutes and happened early in the morning. I waited for our pediatrician's office to open up and called them. A message was taken for the nurse who called back a couple hours later to tell me to call the Apnea Clinic. I called the Apnea Clinic but the apnea specialist was out due to knee surgery. The nurse told me the pediatrician needed to see Liam right away and that she'd call the pediatrician and recommended I call. So, I waited until after lunch to call. The ped's nurse had the receptionist tell me she'd talked to the apnea clinic and was waiting to hear from the doctor but she'd call me back in a little while. Well, there was no phone call that day. The next day, I called and again a message was taken for the nurse. The nurse called me around 2:00 PM and said to bring Liam to the lab for some blood work (a caffeine level). I did this immediately. The lab said the results would be in the next day (July 14). I gave the office until after lunch, then I called, and was again told the nurse would call me back. This didn't happen. At 3:00 PM and again at 9:00 PM, Liam had more cyanotic episodes. After the 9:00 PM one, I loaded him in the van and took him to the ER in Springfield where they decided to admit him. He underwent another Echo (b/c the results of the one in June somehow never made it to Dr. Tong, the pediatric cardiologist), more bloodwork, and a chest x-ray. All were negative except that his phenobarbital levels were low. So, his phenobarbital dose was raised, he was put on a Home Apnea Monitor, and we were discharged on July 16.
We met with our new pediatrician on July 22 in Springfield. He is wonderful and is much more comfortable dealing with preemies and is in the same clinic as a very highly recommended pediatrician in Springfield (that one wasn't accepting new patients). Anyway, he has said they (meaning him and the hospital doctors) suspect that Liam's "episodes" are actually seizures. He has had a few more since his hospitalization but we've been told not to get overly excited unless he's not coming out of the seizure. We follow-up with the Pediatric Neurologist later in August.
Things again were going well, until the night of July 28. I was changing Liam's diaper and noticed that he was retracting majorly in the sternum (this basically means that when his chest should be expanding, it's sucking in). I immediately called the after-hours number for our pediatrician and spoke with the on-call pediatrician who told us to take him to the ER. I got to the ER at 9:30 PM with Liam. They did a chest x-ray and watched him. The chest x-ray was clear but he was very clearly still having difficulty breathing so they gave him a breathing treatment of albuterol and did CPT on him. This didn't really help, but the ER doctor decided to discharge us at 3:00 AM and told us to call our pediatrician when his office opened (gee, thanks).
I called the pediatrician when they opened on July 29. They told us to bring Liam in immediately. I was already at work and started freaking out because they were very concerned. I was extremely concerned about leaving work due to a letter I got while I was on leave with Liam stating that no leave beyond July 26 would be granted for me and that if I didn't return to work on July 26, I'd no longer be employed with Children's Division. So, anyway, after speaking to our Circuit Manager (who was the only sup in the office at the time), I decided to go ahead and leave so I could accompany Liam to the pediatrician. I met Shane in Marshfield, picked up Liam (while Shane went to medical supply to get Liam some more oxygen - those canisters don't last long when you're on 1 liter), and went to see Dr. Phillips. At the office, Liam was still having severe sternal retractions and some intercostal retractions. He gave Liam another breathing treatment, which didn't change things, so he sent us to St. John's to be admitted, yet again.
While in the hospital, they did a viral panel (which was negative), a repeat head ultrasound (which showed his brain bleed is still resolving but better than the last u/s), and a blood gas. The blood gas test showed his co2 (carbon dioxide) level is too high. They started Liam on twice daily pulmicort and 4-6 times/daily albuterol aerosol treatments and discharged him to follow up with a pediatric pulmonologist....that brings us to yesterday.
Today, Liam is still having retractions and is on 1/2 liter of oxygen (which is way more than the 1/32 of a liter he's normally on). The hospital intensivist told us to expect that he's going to need to be hospitalized several times over the next 2 years. He said once he turns 2, things should start to turn around but for now we'll be visiting him frequently.
So, remember back to the NICU days when we were told that Liam would need oxygen for 10-14 days, MAX....wrong...we're now 2 months out from discharge and he's actually on MORE oxygen, not less. In addition, we're up to 8 medications he has to take daily, see 4 specialists, and are drowning in DME (Durable Medical Equipment) - which includes a nebulizer, oxygen, pulse-oximeter, a home apnea monitor and we'll be getting an oxygen concentrator installed this week because he's on too much oxygen to keep using the canisters of compressed oxygen.
I keep telling myself this will all pass and one day it'll be nothing but a distant memory. Getting to that day, may not come quickly enough, though!
We picked up Liam's medical records this week, before he was re-hospitalized - all 9,000 pages worth (that's 18 REAMS of paper).
As far as good stuff - Liam is rolling over, laughing, and cooing. He is so cute and just melts our hearts!
