About Joshua's Surgery

It has been 10 days since Joshua's surgery; and finally, he is doing well enough to go without oxygen and be able to take breaks (short ones) off his ventilator without affecting his oxygen saturations and carbon dioxide levels. Hurray!!!!

In fact, today... we went to eat lunch out and then shopped in Walmart for a while. And we did not take his oxygen tank with us!

Many people still ask about Joshua's surgery and what it was for... so let me try to explain. He had part of the new breathing pacemakers he will use in the near future implanted into his body.

Joshua had 2 electrodes and 2 receivers connected to long wires like the ones in this picture:

implanted in his chest...

The implanted receiver is a small electronic device, about the size of a quarter and approx. 1/4 inch thick, that receives radiofrequency energy and converts it to electrical impulses which stimulate the diaphragm.

The implanted electrode is a highly flexible stainless steel wire, insulated by silicone rubber, with a platinum nerve contact on one end, and a connector that mates with the receiver at the other..

In the diagram below, you can see where they go inside the body:

you'll also notice a black box connected to white wires with a white circle at the other end.

The box is a Mark IV transmitter like this:

and the antennas look like this:

An external antenna is worn over each implanted receiver and sends power and radio signals from the transmitter to the receiver transcutaneously. This radiofrequency coupled design means that there are no wires or plugs protruding from the skin, and no batteries in the implant that would require periodic replacement.

An antenna is a durable disposable item which requires periodic replacement. It is recommended that antennas be replaced prophylactically every six months.

Here is Joshua showing his surgery incision sites in the pictures below:

Here's a closer look:

the top two incisions are where the electrodes went in (and had to be sewn in around the phrenic nerve

the bottom two incisions are where the receivers (round about the size of quarters) went in (just under the skin so they can make contact with the antennas which will be worn on the outside)

Joshua will not be able to use his pacemakers for some time (we are still waiting to hear from the doctors when they say it is okay to try them out) but when he does, he will use this Transtelephonic Monitor to send information from his pacemakers to the company that makes them, so they can help make sure everything is working properly and they can give the information necessary to the doctors.

For much more information on these diaphragmatic or breathing pacemakers, made by Avery Biomedical Devices, check out their website:

http://www.averylabs.com/breathing-pacemakers/introduction.html

Home from Hospital

Josh only spent the one night and about half the next day in intensive care before they decided to move him on out.

Since we had to wake up at like 3:30AM Wednesday, the day of his surgery, and then I stayed with Josh with the sick baby as his roommate the night of his surgery, by Thursday, I was really, really sleepy. James signed me up to stay in the Ronald McDonald House room available to a few lucky parents whose children are in the hospital. Luckily, I was chosen to get one of those nice rooms for the afternoon... so James sat with Josh.

I figured if they moved Josh, it would be much later in the day or even the following day, so I didn't worry much about it. But, while I was resting and showering, they were moving Josh and his dad to a room out on the intermediate care floor. The best part about it - it was a private room!!!!

Josh called me on his cell phone to tell me the good news. He was feeling good enough that they let him come off his ventilator for a few minutes and he walked out of the PICU into his private room. But he had to get right back on the ventilator. He was sitting up smiling at me when I walked into his new room - room number 922.

Since Josh was successfull in walking from PICU to his new room, and doing so good sitting up in a chair for more than an hour, he decided he'd like to talk another walk and check out the floor. He heard there was a playroom and a theater! So, they came in and turned off his hospital ventilator and we took him out for his walk. I noticed soon after we left his room, he was really sweatting alot. And I noticed he got pretty quiet even though his dad was talking about how great the theater was when we got there and a child life person was there asking him about movies and games he liked. I had a bad feeling that Josh was worse off than he was letting on. I asked him if he needed to go back to his room and get on the vent again, and he nodded his head.

We started back and he got looking worse and worse. I asked him if he needed to lean on me or if we needed to get him a wheelchair. He turned down the chair, but put his hand out for me to hold onto. He barely made it back to the room on his own power. He just wanted to immediately sit in the chair - his lips were turning blue and he was pouring sweat. We hooked him up to the vent immediately. His carbon dioxide was up over 70 (normal is 35-45). And it took a bit longer to get his pulsoximeter hooked up. But it was still down in the low 80s by then (it was definitely lower than that before he got on the ventilator) very dangerous! We had to inflate the cuff on his trach to get as much air into his lungs as possible, and he just leaned his head over onto a nearby pillow and just went right to sleep.

That incident scared me alot! After Josh woke up later, I said let's not do that again for a while. He needs to heal for a few more days before we do another walk around off the vent.

I stayed another night with Josh that night. But things were much quieter this time. Except that we got woke up several times after 4am so that they could get some bloodwork, then respiratory techs had to check the ventilator, and later a doctor could take a look at his incisions and remove the bandages. We kept trying to sleep again everytime someone would leave, but it seemed like we just closed our eyes and someone else was walking in (it wasn't really that quick but just seemed like it). We finally decided to wake up and I got dressed. Soon afterward, Joshua's breakfast arrived and I went to search for coffee (it was awful by the way).

James came from the motel and brought me some breakfast from their continental breakfast buffet. It was pretty good. On my way down to go meet James to help carry in my food, an associate of the surgeon who operated on Josh stopped me in the hall. He said since they weren't really doing anything for Josh (because I was doing all his trach care and giving all his meds, etc.) we didn't really need them and he thought we should be allowed to go home. He was going to talk to the surgeon and let us know later. Wow, not even 48 hours ago, Josh was being operated on. Now they were talking about letting him go home!

So, I had good news to share with James when I went down to meet him. But we didn't know when they would hear back from the surgeon and do the discharge paperwork. So, again, we waited and watched TV. James and Josh played some battleship. And one of my cousins, who I haven't seen in years, came by and took James and me to lunch. We told the nurse to let us know if the doctor called or came by, but we didn't hear anything. Josh was busy watching a movie while we were gone. And he was anxiously waiting for the doctor to let him leave.

As the hour got later, our hopes for getting discharged Friday were dwindling. Then, his nurse said she called and another associate of the surgeon who would have to sign the discharge papers had not heard anything about sending us home. So, we started preparing to stay another night. Josh and his dad were working on picking out foods Josh wanted for his meals the next day, when the nurse came back and said the doctor was planning to come see us as soon as his procedure he was in was done. He was probably going to discharge us after-all!

The doctor showed up just before 6pm and was happy to check Josh's incisions one more time (Josh was concerned because one of them was a bit red around the edges). The doctor said they looked really good, actually. And he was satisfied with his recovery and we could go home if we'd like. Of course, Josh was thrilled to go home.

It's a three hour drive to get from the hospital to our house, and we still needed to go pick up the rest of our stuff and check out of the motel. We figured if we got to leave the hospital by 7, run by the motel (about half an hour), pick up something to eat (half an hour) we could possibly be on our way home by 8pm. That would have us getting home around 11pm.

Our plan was a bit busted, because they were in the middle of shift change and had another patient being admitted. So, our discharge was not complete and we were not even leaving the hospital until about 8 or so. We decided to go to the motel, drop everything off there, get some food and eat at the motel. We spent the night and had our free breakfast there the next morning. We loaded everything up and left there about 10:30 or so the next day.

We made it home Saturday around 1:30pm. The problem we faced was that Joshua was having trouble keeping his oxygen saturations up unless we inflated the cuff on his trach. When we do that, though, he can't talk. I told him to try and nap as much as he could so we could inflate his cuff. That worked the biggest majority of the way home. But as we got closer to home, he wanted to wake up and talk to me. And his numbers got worse and worse. It was really starting to worry me. So, instead of stopping for lunch on the way, we went straight home and hurried to get him and his ventilator into the house. James brought down his oxygen concentrator from his room and we got him hooked up to it all right away.

We've kept him hooked to both vent and oxygen since we got home, and cuffed his trach as much as he'd allow. He has been complaining some of pain - mostly from his being constipated - but also from healing from the four incisions. But we now have his prescription for some good pain killers filled. And he is finally feeling better. Josh and I camped out last night on the couch in the recliners, so he wouldn't have to try and climb the stairs.

I've also kept him home from church so he could get as much rest as possible. But we are glad to be home! And just in time for Father's Day.

Day One Post Surgery

Thursday, June 18 2009 - morning

Joshua came through surgery well. The doctor came and gave us the news about 10:45AM. That means the surgery took about 2 and a half hours. Pacers for both lungs were placed and tested. Josh has four incisions about 3-4 inches across, two on each side of his chest. It took about an hour or so for him to sleep off the gas they used to put him under. It was another hour or more after that before they finally got him a room in the Pediatric Intensive Care Unit.

We had a little trouble as we were following the transport team as they moved him from the 2nd floor (where surgery happened) to the 9th floor (where the PICU is). We did not fit in the same elevator as the team (since we had bags and Josh's ventilator) so we took a separate one. But, once we got upstairs, there was no sign of Josh or the team. The ladies at the desk on that floor called back and to the PICU but said he was not yet in the room. Well, we had Joshua's ventilator and even though he had a transport type vent attached, he would need his regular vent very soon. And they wanted us to wait like 30 minutes to go back - that just would not work!

James was getting really upset (remember he had had no sleep and he was very worried about Josh) so he started to get a little loud explaining to the ladies that Josh had to have his vent or he could die. (that was probably a little over-exagerated because the team could bag him or something if things got bad). Anyway, meanwhile, another parent who had been allowed back decided to help us and held the door open for us. But the lady at the desk didn't want us to be allowed back. It was kind of crazy. Then a member of the transport team (who had been Josh's nurse in recovery) came to tell us he was put on a regular hospital ventilator and didn't need our vent right now so we could go sit down and wait. Just as I was about to turn around to do that, another nurse from PICU came running out and telling me "Okay, Mom. We are ready for you. Come on back... come, come, come." So, I went on in and they seemed very apologetic for the confusion. I think the transport team (and especially the nurse from recovery should have done a better job in communicating with us since they are the ones who should have told us what was going on before we got separated on the elevators in the first place) But oh, well. That is over.

So, Josh tried to stay awake and watch tv but the medicine he is taking was making him sleepy. I told him it was okay for him to fall asleep. Then, every time the medicine would start to wear off, he would start to feel lots of pain. It sure did come on fast! And when he was awake, he didn't feel up to moving much at all. He had me doing just about everything for him. Poor thing. I'm sure he didn't expect to feel much pain if any - but he sure is.

Then, around 7pm, they brought in another patient that would share his room (because it is big enough for 2 pediatric ICU patients). The patient was a little baby - probably not more than 3 months old. We overheard that the baby was on a ventilator as he was brought to the hospital (I"m guessing either by ambulance or perhaps flight) but they were planning to extubate him. I'm guessing they did that once he was in our room, but luckily they had the curtain drawn so we didn't have to watch it. The baby's mom wasn't here for a good while. I'm sure she had to drive herself or get a ride or something. It was hard to sit there in the same room with a crying baby and not be able to get up and go to him to help. But the staff tried to be in with him as much as possible.

During the night, the baby must have had a very hard time. He had to have a machine brought in called a C-Pap and he had to wear a face mask. The baby did not like that at all. And even with it, we overheard that his oxygen saturation levels were in the 80s. The doctors and respiratory techs came in very frequently all night long, increasing something on his machine to try and get the sats up. I heard once that they might have to intubate him again - but I don't think they did.

With all the commotion going on last night, Josh and I (yes, Josh had me stay in the room with him all night) didn't get much sleep. But the nurses and respiratory folks say they think we will probably be moved to another room today - maybe out on the intermediate care floor. That would be nice. But we have to wait for the surgeon to come take a look at Josh first. So, we wait and watch tv and cat nap from time to time.

Josh is hurting so bad he doesn't feel he can lean up or get up - in fact, he barely moves his hands even. I know he will have to start moving around and getting up soon or he won't be able to come home. And I know he wants to go home and get out of this hospital.

Meanwhile, here are the pictures I promised in my last post. They are from Tuesday after Josh's post-op appointment, when we went to Hermann Park near the hospital. We enjoyed watching the paddle boats, ducks and turtles. Then, there are a few pictures from just before surgery. They had me wear a big 'ol pair of coveralls called a "bunny suit." It's not very attractive, so I let James take a picture of me in it since we took pictures of Josh in his hospital gown.