So Good

The last time I posted I said we were being discharged. Well, we got to come home later that day. Nathan was still being weaned off his narcotics so the pain team tried to keep us until that was over but I refused, there is no reason I can watch for withdrawal symptoms in other people and not in my own child so we were sent home. The doctors told me I couldn't go back to work until he was off all his medications but that wasn't a big deal, I got a couple more weeks off work.

Nathan has been doing wonderful since he got home, it's amazing how good he's doing. Since he came home he has been having a ton of fun playing with Trevor and getting his strength back. He is finally at a place where he has tons of energy throughout the day and is getting restful sleep at night. He's still having some trouble with coughing, he throws up each time he coughs because he has no idea how to cough without throwing up. He is still throwing up a little at night but that is slowly going away also.

Today Nathan and I went to preschool to visit and see all his friends. He will start going back to school on Monday but will be taking the bus so I wanted to go with him so he was more comfortable on Monday without me. I also wanted to talk to his teachers and tell them about the changes since his trach was removed. The biggest change is that he can no longer eat, at least until he has a swallow study done to make sure he's safe to eat. When Nathan goes back on Monday he will be taking the bus which is much nicer for us since it's a 45 minute drive each way, that 1 1/2 hour in the car twice a day we no longer have to do! We are not going to miss the drive and Nathan is thrilled to be taking a bus, I just hope it's a real bus and not a van!

Trevor has been walking all over the place all the time. That means he's into everything. The other day Nathan was going to the bathroom and Trevor decided to help, he threw some toys into the potty. I discovered I don't really like picking things out of the potty. Trevor loves to chase the cats around, he thinks they are playing while Snowball is running in fear (no wonder she hates people). Toggle does better and tolerates his "petting" since Trevor will usually lose interest quickly. Trevor loves to play with whatever toy Nathan was last playing with and that drives Nathan crazy. I am trying to teach Nathan to share toys with Trevor but he doesn't like it.

We are also dealing with a mouse infestation. I think a mommy mouse came in and has babies and we are slowly finding all of them. We caught one in the trap, Toggle caught one and Snowball caught three. The problem with the cats catching the mice is that they like them alive, and then they drop them so they can keep playing with them. It's a fun game for them but terrifying for me. Snowball  yesterday had one in her mouth and then dropped it, the mouse ran towards me and I screamed and stood on the arm of the chair. Snowball caught the mouse again and then the cycle repeated a few times before Matt managed to get Snowball and the mouse onto the front porch so he could catch the mouse and get it out of the house.

We are hoping that 5 is the limit and we won't catch any more but I'm still living in fear. Earlier tonight I had Nathan sitting on the dining room table while I stood on a chair and Trevor was in a chair eating dinner, I heard a squeak. In retrospect I think the squeak was a chirp from a bird but it all sounds the same to me ;)

That's all that's going on with us. Tomorrow it's back to our regularly scheduled programming; I go back to work and the boys are going to my parents for a sleepover.

D-Day

Well, today is it. The day I've been waiting for since we first stepped foot into the inpatient waiting area on the 25th before surgery. That's right... we're coming home today. Nathan is doing amazingly well and ORL has released him from their service. He is safe to go home with no trach, for the first time in his WHOLE life he will be home with no trach.

That's right, Nathan has NEVER been home without his trach before. Matt and I have no idea what it's like to have kids and no one have a trach. Nathan was trached when he was 4 months old and had never been home before. We took him home a short 2 weeks after that surgery for the first time. We only know what it's like to live with constant illness, medical stuff and doctor appointments. We have no idea what it will be like to live with no trach, a big change for us all.

While Nathan is still weaning off his narcotics he isn't allowed to go back to school and I can't go back to work, Nathan is under my care in case he has any withdrawl symptoms. They typically don't send kids home on ativan and morphine weans, but they said because I'm a nurse we can take him home. We have to follow-up with our pediatrician in a few days so he can see how he's doing. So today Nathan gets to come home and hopefully in a week or so he will get to go back to school. The most exciting part of going back to school is that he won't have a trach, he won't need a nurse with him for transportation which means he will be able to take a bus to school. Matt and I will no longer have to drive 45 minutes each way twice a day for school. Nathan's just excited to go on a bus.

Now I'm impatient, I want to leave NOW. Not that it would do any good, my ride is still in NY and won't be here until around noon (hopefully). So I am hoping that Nathan gets discharged right around noon and we won't have to hang around the hospital long. What a better thing to do on this rainy day than take my sweet little boy without a trach for the first time in his life?

So Long SICU

Nathan has been seeing a physical therapist for a couple days, usually he just shows them how good he is at throwing a fit. Today he was in the hall walking around and playing catch - it was at that point that the doctor told us we were too loud for the ICU and were being moved a regular floor soon. A little while later Nathan was moved out of the SICU and up to a regular floor.

Now my pestering the nurses about discharge has begun. I've requested Wednesday because it's a convenient day for me to go home, I have to go home that day anyway. The main thing keeping Nathan in the hospital is his narcotic pain meds he needs to be weaned off, and it could take a while to safely get him off the meds. So the pain team was in earlier and said that if it comes to it we could request a transfer to Albany Med so that he is closer to home while he is still weaning off his pain meds.

We still need to have a swallow study done to see how Nathan does with eating and drinking, but other than that there isn't much he still needs to do here. He is breathing great on his own, he doesn't need very frequent suctioning - I don't think he's been suctioned all day. He is getting some chest PT with each nebulizer treatment but suctioning doesn't usually follow it. He is amazingly good at clearing his secretions on his own.

I am, as are all the doctors, amazed at how good Nathan is doing. He is making huge strides in being able to live outside the hospital without his trach. I can't wait to get him home, and be able to sleep in my own bed!

So for now we are waiting, and enjoying our new private room with a view of the helicopter pad. We are hoping that tomorrow he can come off the monitors so he is free to walk around and sit at the window to watch for any helpcopters.

Now I'm off to walk somewhere to dinner with my mom. She's insitent that we walk, I think I've been indulging in one too many cookies while I've been here. I guess when we are finally back home it's back to weight watchers, Lisa you better be ready for WW.

Breathing...

Nathan did pretty good today, all things considered. He had a pretty good night but I did have to sleep right next to him in a chair - I assume he's going to have my sleeping here until we go home. Whenever Nathan wakes up he panic's if he can't see me, so the chair it is!

Nathan was able to move around a little today, he sat in the chair (my bed) for a little while so I could change his sheets. He was also able to go for a wagon ride, one lap around the ICU and he was done. Usually he is so happy to see people but this time whenever we walked by people he closed his eyes and pretended to be sleeping so he didn't have to talk, he wasn't feeling social I guess. Then a physical therapist came by and tried to have him stand up, while he did stand up for a second he just wasn't that into in and quickly had a meltdown and went back to bed. Considering how long he was sedated it isn't that suprising that he is so weak, his strength will come back eventually. Also, he's going through withdrawl and it isn't fun. They are weaning him off his morphine and sedatives so he can move to a regular floor, but the withdrawl he's going through is making him shaky, sleepy and irritable. They are trying to control it as best they can but some side effects are bound to happen. Hopefully it doesn't last long.

He also started feeds today, a big step in the right direction. He is now eating 10ml/hour which isn't a lot but it's something. They are going to slowly increase him to get him to full feeds and then increase his rate more to get him back to just eating overnight.

In order for Nathan to be ready for discharge he has to be breathing safely on his own, eating normally for him, and be off his meds. It doens't sound like a lot but it's a lot for him and we are going to be here at least another week. We expect to be in the ICU for a few more days while they wean him off narcotics and then on a regular floor for a few days. We are both ready to go home; when he went back to his room today after the wagon ride he cried - he thought we were going home. Hopefully sooner rather than later.

It's Done

Nathan is back from the OR and did great. I expected him to be in there for a while but about 35 minutes after he was taken in the ORL dr came out with papers in his hand. I assumed something had gone wrong and we needed to sign more consents. The papers he had were pictures from Nathan's airway, they were done. After over 3 years with the trach Nathan was, for the first time, breathing on his own.

Dr.N said that Nathan was going to have some "transitional" breathing where he wasn't breathing great and was going to sound bad but it was normal and would eventually go away. Neither of us was ready for what we saw - our little boy moving around and surviving without his trach. It was amazing, but our amazement didn't last long, he was struggling.

He is trying to cope with the effects of withdrawl from the sedatives and his new breathing. It's a lot for a little 3 year old to handle and he didn't like it. He was uncomfortable so they ordered a different medicine that doesn't slow down his breathing but makes him more comfortable. Until they got it we had to try to calm him down. At one point each Matt and I had to walk away, we were overwhelmed.

His breathing sounded awful and he was thrashing around in his attempt to get some relief. A 3 year old in withdrawl isn't fun. He needs to be suctioned through his nose until he figures out how to cough effectively, and he hates it. It takes 3 of us to hold him down, I hate it. But he is slowly getting better. It's going to be a long night, the nurse brought me a chair so I can sit right next to him all night but still get some sleep. For a little while today he even sat on my lap and watched a movie.

His voice isn't great but it's there. He said "mom" and that is good enough for me right now. The rest will come, but for now we are thrilled with where he is.

Waiting

We are still waiting for Nathan to be taken to the OR, I guess the Dr is a little behind schedule.

Time for Today

Nathan will go back to the OR at 2:30 this afternoon. The doctor is expecting things to take no longer than 2 hours. No guarantees that Nathan will actually go at 2:30, the doctor has a few cases before Nathan and if he runs behind on one that will push everything back a little. I'll update again once Nathan is out of the OR.

Since he is coming back to the ICU after he is extubated he will come straight to his room from the OR, he won't go to recovery at all. Now we just have to wait.