Trapped

We’re trapped by a drain (aka closed wound suction evacuator) in Nicks leg and if it does not come out by two o’clock he will have to have another round of antibiotics. Nicks iv keeps bleeping and I worry it will stop working. If it does I am refusing to let them put in a new one (literally). Unless someone comes in and says the drain has to stay in which would mean we’re not going home and Nick can’t do PT cause he can’t put the cast on till the drain is out…

It’s like “If You Give a Mouse a Cookie”…

if you give a kid a drain in his leg he’s going to have to have antibiotics to go with it and if you give him antibiotics you’ll have to give him an iv and if he has an iv…

All ending in the fact that we can’t go home. I am watching the clock hoping Dr.Standards PA gets here in time. I thought it was a clinic day but it’s not. Apparently Dr. S has a lot of inpatients. I hate to be whiny but I want to go home. I want to shower. I want Nick out of here. He says he wants to stay (cable tv, meals made to order) but he also said “I’m tired of my life. Well not my whole life but this part of it”. I think home will help distract him from this part.

I want this part to be over too. It was November I think when Nick’s foot began to hurt and this adventure began. We’ve had other ups and downs as well. For Nick his arm is the stand out. And there’s moving. Nicholas said he wants to grow his hair longer to fit in our new neighborhood. It’s funny cause it seems like the kids in our area march to the beat of their own drummer but what do I know. Frankly a hair cut while having an arm cast sounded like an itchy proposition to me. I am happy to let him do whatever he likes with his hair.

I guess I should order lunch. May as well be trapped and well fed!

Its all in the details.

Sometimes it seems like the little details of a hospital stay are the make or break things. Surgery is important and the point of course but during surgery Nick is asleep. Waiting is hard but someone else or rather a whole room full of people are taking care of my boy. The fact that I trust Dr. Standard and his team makes all the difference.

Recovery or the PACU seems to have it’s own series of concerns. The first thing I consider is how Nicholas wakes up. If they let him wake him wake up on his own he does much better. Every time that I know of that they have woken him he ends up so upset! The last few times in recovery have been much calmer. The other recovery factor of course is pain management. That’s probably the most important but when it’s going well it is easy to overlook. Sinai has always done a great job in that department.

The anesthesia department has been great about doing things in a way that works for Nick. He’s gotten a little big for the happy juice to help much and at first they have at times tried to give him an iv before he’s in the operating room. Its not necessary though because thankfully Nick is really calm and even when he’s nervous I am able to help him. That by the way is the best feeling in the world. Knowing I can help. Knowing what he needs and knowing he trusts me. The regular everyday moments of motherhood are often the best and most special things to me but the hard times, the times when I am in the zone. It’s like extreme mothering and so far I have passed the test.

Recovery is mostly waiting. If it’s a fixator surgery there is that first look. Even though it is wrapped up it’s still sometimes hard to see. It’s also an anxious time as a mom because I am mostly hoping Nick stays asleep but also wanting to hear him say he’s ok and tell him I love him. Waiting for all the necessary prices to fit together so Nick can be moved to a room can be tricky. Dr. Standard’s team need to put the orders into the computer. Anesthesia needs to sign him out and they can be hard to find. Then the PACU nurse needs to give a report over the phone to whoever will be his nurse once we are on the pediatric unit. Said nurse has other patients too and needs a few free minutes to take the call. So more waiting.

After that all happens we travel. It’s a bit of a trip at Sinai with the new children’s hospital being a bit far from where surgery happens! This time we were derailed by one of those medicine delivering robots so the trip was even longer.

Arriving in Nicks room is such a relief. I set up our stuff, turn on the tv and answer questions. Likely questions I have answered multiple times already but that’s ok. Once Nick is settled we move on to ordering food! It can take 45min to an hour so we need to be on top of that.

The rest of the important details include the iv. As long as it keeps working as it needs to it’s great. If there is any chance it will need to be replaced I have a plan in my mind to refuse unless it is absolutely necessary. That’s when I will loose my good reputation here at the hospital.

Needing a blood draw can be a problem too. Nick’s veins just don’t cooperate often. Though last night the fabulous superhuman nurse Melissa used Nicks foot and was quick and practically painless. I loved her so much in that moment. Thank you Melissa. I still love you just thinking about it. Melissa was altogether great. But so were the other nurses Nick has had. Sharon was his nurse all day today and she was amazing. Some people just do their job with such ease they put you at ease. That was Sharon.

PT and OT are important details as well. Nick got a reprieve and didn’t have to walk today since he has an epidural but he did have to get out of bed and into a wheelchair and he did not want to. Sometimes I have really just wanted PT and OT to leave him alone but I do try to be compliant and helpful! I think I did pretty good this time. When Lisa told Nick that if he got into the wheelchair he could go to the play room, Nick said he didn’t want to go to the playroom. I knew he was scared and I talked to him about how experienced Lisa and Laura were and how much better it would be for them to help him move as opposed to us moving him later because even if we didn’t go anywhere he had to get in the chair. This kind of convincing does not always work but this time it did.

I do not envy the physical and occupational therapists in what they have to do and the opposition they may face from the child and parents but they do amazing work. I don’t think I could make a crying kid sometimes with a big ex fix on their leg stand up and even walk!. When Nick was a baby I had times where I had to walk away and cry. I don’t think those moments are totally behind me but I realize if I cooperate Nick is easier to bring around too. They have reasons for doing what they do and really trying to make Nick walk for the first time by ourselves would be harder.

Epidural removal and catheter removal are big details too. Sometime the catheter bothers him. This time he wanted to keep it for convenience sake! Of course once it was out he realized he was better off but I think he feared the removal so much he convinced himself he was better off with it. It hurt being removed which everyone says it shouldn’t but it does hurt Nick pretty consistently. The epidural removal however was nothing this time. Even the tape pulling wasn’t too bad! That was it’s own little miracle!

Another potential IV issue is the way it feels when certain meds are pushed in. Apparently some people never feel it. Nick always does and some things burn. In fact I will have to finish this post later cause it’s iv antibiotic time and it’s feeling really cold in Nicks hand. Got to go!