Finding the balance of resting and exercising

Day 16 - Hospital Stay
Day 11 - Intubated

Don't worry, everything is fine. I know I blog a little late today but don't you worry, Logan is stable. The plan for him today is to do two 2-hour lung exercise (on cpap) only. We don't want to stress him out like over the weekend where he needed a few days to recover. Yet, I don't want him not to breathe on his own either. That's why the plan is to just do two 2-hour sessions. I had to leave early today to do a Costco run, so that we have enough toilet papers and pull-ups for Aidan :) By the time I left at around noon, the respiratory therapist hasn't come in to change his ventilator settings to be on cpap yet. They were waiting for the Chief to confirm some of the settings before doing that. Logan was doing fine during my stay in the morning. His respiratory rate was definitely calmer than the last few days. I will check with the nurse tomorrow to make sure he did fine with his exercises and his blood gas results are good. I believe for the rest of the week, it should remain pretty calm. We might, or might not receive the test results back next week. Just like I've been saying, we'll take it one day at a time, one issue at a time. Right now is to deal with the breathing issues.

Received a call from Social Security Office today. The social worker at the hospital has made a referral for Logan. I'll be heading over to their Campbell office tomorrow to see if Logan qualifies for any services. If he qualifies for Medi-Cal, that would be a great help. It can help cover some of the medical costs and future medical rental fees that our insurance doesn't cover. I don't even need him getting any SSI payments, just Medi-Cal would be awesome.

I left a message on Golden Gate Regional Center's intake voicemail last Friday and haven't heard back from them. The message said it might take him 1-2 weeks to return any calls. Doh! Must be due to all the budget deficit. I know I should have called them 2.5 months ago when Logan's pediatrician mentioned it. However, I was still in denial at that point. I guess I am slowly moving into the acceptance stage. I am pretty sure Logan qualifies for their services since he would be having different developmental delays, on top of his stroke.

It's interesting how I work with adults with developmental disabilities, and now I am a parent of one. I remember telling parents of my clients not to spoil their children, and to set boundaries. Now that I am a parent, how can I not spoil Logan and to give him the best? How can I not have the same type of worries that these parents, who I have counseled in the past, have? How can I not worry about my son living independently in the future? In a way, I am glad that I work in the field. I know there are great services, great staff, great social workers and program managers out there, that will provide for my son in the future. I know that he will be OK when I am not around anymore. That is, if I am given the chance to raise Logan up to be the best that he could be.

Had a very long phone conversation with my dear cousin Peggy today. She has been such a great emotional support to me, sharing with me her experience, tips and suggestions. I would be forever grateful. I will strive to be the best mother/social worker/nurse for Logan. Peggy shared her little realization with me regarding her son and Logan, and babies who have similar needs. When she's in the NICU, she observed that most of the babies who had the most needs were born in loving families. It seems like God has a plan for these little ones, that he knows they will be loved in the arms of their loving and caring parents. It comforts me to know that God trusts us in taking care of Logan, and that he's not born in a single-parent family who is struggling emotionally and financially, with no medical insurance.

Calmer today

Day 15 - Hospital Stay
Day 10 - Intubated

9:00 a.m. - Arrived at the hospital and saw the nurses and student nurses finishing up giving Logan a bath. He needed that bath! His arms were so stinky from the restraints and his lips were gummy from the tape. Nurses told me he still had a few episodes of high respiration rate last night and this morning, but definitely not as bad as yesterday during the day.

9:45 a.m. - Ped came in to do an ultrasound of his heart. I could see and hear his heart beating. I recorded a little clip of his heart. The whole process took about 20 minutes. Of course, he was mad at times because of the gel and poking, but he did fine. Ped later showed and explained to me what he did. Everything looks good. His heart isn't especially bigger, blood is pumping in and out, chamber sizes are good. That's good to know that the heart is fine. Hopefully, one less thing to worry about. Still waiting for rounds.

10:30 a.m.- RT came in to fix the tubes of his ventilator. There was a lot of water accumulated from the vapor of the warm water. I am thinking that might have caused the alarm to sound off like crazy yesterday. Also had his daily chest x-ray to check the position of his tube.

11:45a.m.- Late round today. Basically, it's going to be a quiet day for him (fingers crossed). We will try to have him exercise again today for just one 3-hour period to see how he does. Then he will be put back on the ventilator at a rate of 20 for the remaining of the day. He got so tired the previous days that we're starting slow. So far, he's been doing well and the alarm hasn't sounded off since they got rid of the water. I am hoping it's really was the extra condensation that's causing the problem and he wasn't really breathing too hard. Doc also said they might give Logan a little more drug today if he appears as agitated as yesterday. His body might have gotten used to the drug. He was on it every 6 hours before, and could be given every 4 hours. However, when we wean him off later, there might be a withdrawal, e.g getting fussy and won't fall asleep easily.

11:55 a.m. - Chaplain just stopped by and brought Logan some flowers (budding flowers, I should say). He said he's the messenger as someone donated them. How sweet. He checked in periodically to see how we're doing. He said it's good to see me sitting down coz yesterday he witnessed how I was by Logan's bedside most of the time because of the alarm.

12:15 p.m. - Cpap started and he's breathing on his own now. So the flowers (daffodils) are donated by the American Cancer Association. They gave Logan a little bear as well. Let's cheer on Logan to breathe! Gave Logan a half-manicure/pedicure. His nails are getting really long and dirty. How did dirty stuff get in his nails when he's not even touching anything?!?! Well, I could only do his left hand and foot, since the ventilator is on the right side and I didn't want to mess with the tube. He usually only raises his left arm, or I should say "allowed to raise" his left arm, I guess he can't scratch with his right arm quite yet.

2:00 p.m. - Uncle Kyle and Auntie Leonor came to visit Logan, and brought a little giraffe rattler for him. They commented Logan is looking more like daddy and is gaining some cute chubby weight.

3:00 p.m. - Logan's cpap has ended and he wasn't doing too well towards the end of it. His rate was getting high, probably because he's too tired from the lung exercises. He actually had a couple apneic events and the backup ventilator kicked in to help out. The Chief came in and showed the nurses some settings regarding the ventilator. She also suggested Logan might not need to do too many lung exercises and he has kinda proven to us that he's having a hard time breathing on his own. However, we could still have him do shorter exercises instead of long 3-hour stretches, so that he's not too dependent on it. She also mentioned some triage plans in case something happened to Logan after he's discharged. We would have to explore different options in the future, but should not jump the gun until we get back the results from the blood tests. The new batch of tests were sent off today, special preparation and delivery to Philadelphia. For the time being, we will keep Logan nice and comfortable. The Chief also explained a little more about the use of chloral hydrate to get Logan to sleep. He can have a higher dose, if needed, and it shouldn't cause too much harm to him.