All in all, not a bad couple of days. Ben
Tuesday, December 31, 2013
All in all, not a bad couple of days. Ben
Sunday, December 29, 2013
And he is back at it again.... supporting the niners, sleeping and waiting to go home.
Nicole and I have a family meeting with all his doctors on Monday to discuss next steps since it seems like h he is not getting any better in the breathing and swallowing department so we will have to make some hard decisions once we figure out what the doctors think.
With that being said I will have more info for everyone tomorrow, but as it stands now he is dreaming of football, Bentley and Murphy.
Pierce wants everyone to know that he thanks them for all the prayers and well wishes, thinks that birdie has a good voice, wants to know who that handsome fellow is in his mirror that he keeps running into and that he looks forward to meeting everyone soon.
Tuesday, December 24, 2013
Friday, December 20, 2013
So, I have not been posting anything as there really has not been much change. He has been on a breathing machine, on morphine, strapped down to the bed with weights on his head. This had been to keep everything where it is supposed to be and not cause undo trauma. All we could really do is watch him lay there asleep.
But today is a different story. This afternoon they extubated him which means he doesn't have the tube in, no drugs and is breathing on his own. He still had to keep his weights on his head, but he looks much better, is breathing, sleeping and swallowing. Yes, swallowing. It looks like he is working it all out.
That is the update for today. Great news!
Tuesday, December 17, 2013
It's 700 in the morning and we are waiting for the surgery spot. We were told that they might have brought him earlier if a spot opened up, but nothing did, so he went down to the OR at 1130.
He was not a happy camper when we went down. I think he just wanted his diaper changed. Oh well. So the first couple of pics are of Pierce on his way down to surgery.
30 minutes after he went in and we were banished to the waiting area (where you can't eat or drink) we were summoned by the front desk to talk to one of the many doctors.... This time it was the ENT Doc that wanted to tell us about the scope work that he had just completed.
He said that all looked really good pay the jaw and that when he was looking at the tongue in relationship to the throat, that he has a mild problem. He said it wasn't that bad but was obviously positional so they were moving forward worth the other surgeries. Phew.... That is good news.
Update: 330pm... Pierce is out of surgery. All went well. No complications. All was routine. Dr. Oh said that the tongue lip adhesion really brought his tongue forward anf opened up his airway. The g tube went in fine and the nissen was routine. All in all the little fella is good. He is currently sedated and on a breathing machine and will be either until tomorrow or next week. Just depends on him.
So, yay for surgery and we will see how this works for him.
Saturday, December 14, 2013
All seems to be going well, as well as can be expected. He is tolerating being on his side with his head turned sideways. He hates the oxygen tube that is in his nose. He has figured out how to grab it with his hand and pull it out and put it in his mouth. When I came in this morning, the nurse had taken to taping it to his face nose so that it wouldn't come out. He is not happy about that at all.
I hung out during rounds and they went over everything that happened during the last 24 hours and there were a couple of things that were of note. First, they upped the amount of air that he is getting through the nose cannules (sp?) because his CO2 level was a bit high last night. They are going to start checking that daily now to make sure that everything is okay. The second thing is that they were not sure that the Plastic Surgeon would do the tongue lip adhesion surgery because of the couple of concerns that the neurologist had about his brain and the 'low tone' or 'weakness'. I asked why and they said that they would check with all the doctors, but they thought that it wouldn't make a difference if his brain is not sending signals to his muscles.
After rounds, Dr. Oh came in to talk to us. He is the Plastic Surgeon. He sat and discussed the options with us for Tuesday's surgery. Overall, I think that we will go for the tongue lip adhesion surgery and then if that doesn't work, we can do the distraction of the mandible. Last resort would be a trachiostomy (sp?) which we think should be the last resort unless there is a serious concern about his trachia. Before they do all this, they need to take a CT scan of his head and they are going to do a camera of his nasal cavity and back of throat through the nose.
As of 15 minutes ago, the came to take him for the CT. As they said at night with the MRI, he has to be on his back (ultimately, the MRI was done with him on his stomach) even though they know that he doesn't do well on his back. Transport was there and got him all set up with a device that holds the tongue forward to allow breathing. We let it happen even though we don't believe it was completely necessary. He is down there now and should be back shortly.
Hopefully soon this will all be a distant memory.
Friday, December 13, 2013
Last night they did a sleep study. Uncertain on the results yet. It will likely take a few days, but we did get the results of his eye test and EEG. Both were normal. Thank goodness!
Got to hold him again last night for an hour. He slept mainly. Seems to be much more comfortable on our chests.
Will update when I know more.
Wednesday, December 11, 2013
Tuesday, December 10, 2013
Today Nicole stayed at the hospital while I went to work and met with a ton of doctors and specialists. It was a lot of people...His doctors (all three, attending, fellow and resident) neurologist, geneticist, cranial facial specialist, plastics team, social worker, case manager and occupational therapist. They all told us multiple things. Here is the skinny...
MRI scheduled to see his brain and what might be going on. CPK test scheduled to see about muscle disease. Sleep study to be scheduled after MRI. Work with therapist on feeding over the next few days. After sleep study, discuss any surgery or fix for breathing issues related to PRS (Pierre Robin Sequence). Do broad genetic testing to see if anything else can be found.
They tried to take him down for the MRI Monday evening, but the thing that they did, was unsuccessful and they had to bring him back quickly and reschedule for the next day.
They then took blood and that went fine. Then off to sleep we all went.
Due to the impending snow storm we got a call as we were about to walk out of the house that they wanted to transfer Pierce to children's right away. With that being said, we rushed out of the house so that we could go with him.
We of course asked how he did over night and they said he did great.
So, off we went and got there just as they were showing up. They put a small oxygen tube in his nose for transport, but no major machine.
He got to ride in a pod in the children's limo.
We were happy when we got to children's. He has his own room that Nicole and I can stay in and he has great care.
Doctors came by to see him and introduce themselves and told us that many doctors would be coming in on Monday. He had a good first day, got comfortable and waited for Monday.
Today we talked to the director of The George Washington University Hospital, Dr. Aly. He was great. He sat us down and told us that he wanted to take Pierce off the machines and see what he could do. This was great! We had been waiting for this day. Then he said the next day they would transfer him to Children's National Hospital.
So, we went out to dinner, came back and he was off and doing well!
What a great day.
So, yes, I am skipping a few days here as not much changed. Pierce is still in the NICU. It has been determined that he has Pierre Robin (ro-BAN) Sequence which means he has a small chin, large tongue and cleft soft palate. This causes his tongue to fall back in his mouth obstructing his airway. So, for now they have him on a breathing machine (I think it is called a bi - pap or nacpp?) To clear out his lungs from the meconium and keep him breathing.
He is really uncomfortable and does not like having his chin strapped shut. It is hard to see him this way, but it is best for him.
On day four they took him off the breathing machine and put him on a CPAP machine which doesn't breathe for him, but just provides pressurized flow. He does well with this machine and breathes best on his side or prone.
As it sits now, he is going to stay on this machine till Saturday and then they plan on taking him off and seeing if he can breathe himself. At that point they would then plan on transferring him.
December l, 2013... evening, football is on, Nicole is cooking & in labor. Yeah, she's cooking. Sevenish rolls around & I am noticing that her contractions are close enough together that we have to go to the hospital. So, off we go. I'm going to make this easy on everyone & just say that labor lasted until 4:20AM when Pierce Kovite Zeitler was born.
Immediately he was whisked away to the NICU because he was having breathing issues. There, they had to put him on a breathing machine.
At this point it was midmorning of December 2, 2013. Nicole & I decided to stay at his bedside all day with only a couple of naps here & there. As the day drug on, we realized that he was going to be there for a while. While this was not easy, we were able to sleep a little bit that evening.
Attached is a picture.
Saturday, July 27, 2013
I said that it was a port to collect things from ships back in the day. David didn't agree as he thought that from the porthole to the water was too far to work for ships. When we got back to his house, we found out that I was basically correct:
You can still see ancient stone structures that were once used to load the tartins, sailing ships that transported the stone.
Here is where we stopped for our picnic:
And then on our way back, we stopped at an inlet and took a nap.
I have to say, this part of the trip with Rachel was wonderful. This day was actually my favorite of the trip as without Rachel and David, we would not have gone to the Calanques, or seen what we saw. It was super awesome and I am very thankful and grateful for their hospitality.