Endoscopy, Bronchoscopy and PH Probe

Today was a bit stressful on me as we took Caden in to Sutter Memorial Hospital to have a bronchoscopy, endoscopy (upper GI) and ph probe. We arrived at 6 am and they started preparing him and us for the procedure at 8. When I spoke with one of the nurses earlier in the week I told them I wanted the best person available to do his IV because he is a hard stick. We learned while at Stanford to advocate and make sure we had the best person doing it because he is so hard to get a line in. That was one of my biggest concerns today was worrying about him being a pin cushion while they tried to get the IV in. I told our nurse this morning that we wanted the best person and she said that she was the best which must be why they assigned her to Caden. She spent quite a bit of time looking for good veins and found three options. The first one she got right in but it wouldn't go in far enough; she thought it was being blocked by scar tissue or a valve in the vein. Either way, it wouldn't work. Caden was screaming the whole time. She had to poke him a second time but hankfully it went in and worked great. He only had to be poked twice, I just wish it was only once.

Caden did so well waiting for his tests. Aside from screaming during the needle sticks, he was very content and happy. He played with some toys and was in a good mood. I am so grateful for that! Almost exactly at 8 am, they came to get Caden for his procedure. They allowed me to carry him into the room and hold him while they got everything in place. Then I laid him on the table and he was out really quickly. It was so sad to see. The sedation they use works really fast. As soon as he was asleep, we left the room and went back to the patient room to wait.

Dr. Davies, Caden's GI doctor, came in pretty soon to give us her update. The endoscopy (upper GI scope) showed the Nissen fundoplication was still intact (I almost wish it wasn't!) and didn't appear to be too tight. She thought this might be part of the problem contributing to his retching but after looking at it she didn't think it was. The placement and location of the g-tube balloon (the balloon of water which holds the feeding tube in place) looked good also and didn't seem to be causing any irritation anywhere in the stomach or esophagus. So, still no real answers as to what causing all the retching. She took cultures from several places and will let us know when she gets the results from those tests.

They placed the ph probe during this time as well. The ph probe is a tube that goes in through the nose and down the back of the throat down into the esophagus. It stays in for 24 hours and monitors to see if there is any gastroesophageal reflux. It is attached to a small machine that records all the data. It has several buttons on it which I am supposed to use when he starts sleeping, stops sleeping, starts a feeding, stops a feeding, receives medication, retches, is irritable/fussy, or any other event. In addition, I have a “journal” in which I have to record all the same information and add comments about them. And, I need to write comments next to any of these to clarify what was going on at that time. This helps clarify the results of the ph probe when they look at the data if they can see what was going on in that time frame so it helps them understand how his body is acting. It's kind of a pain because he's attached to this thing at all times and because he has the tube in his nose, we have to keep his hands away from his face. In order to accomplish this, we had to put “No-Nos” on his arms in order to keep them straight and unable to touch his face or grab the tube. Let me just say he HATES them! He loves to sleep on his side and because of the no-nos, it is really hard to get in that position. It's very sad!

The last thing he had done was the bronchoscopy which was done by Dr. Perez, the pulmonologist. She looked at the vocal cords first. The left cord (the one which had been paralyzed during the repair of the coarctation) is now fully functioning. That is good news. However the bad news is that although the cords come together in the middle like they are supposed to, the right cord has a “cleft” in it. A small notch which leaves a hole in the middle of the cords when they are together. This means he is not fully protecting his airway and could cause more problems with eating. It could also influence how loud or clearly he can talk. Right now he has a cute little raspy voice and this is probably why. He might not ever be able to have a strong voice but at this point we just don't know. Dr. Perez said the cleft in the right cord is likely damage from the ventilator tube. Bummer!

She also saw a couple more things of concern. The trachea which should normally be c-shaped, was more flat, a condition called tracheomalacia. He also had unusually large adenoids and tonsils which could be because of the cold he is just getting over or it's possible something more is going on. There are also a couple granulomas below the vocal cords. Dr. Perez thought this was most likely scar tissue from the ventilator tube and said they were small and probably wouldn't cause a problem. She took cultures from several places and we should have those results in a couple weeks. Anyway, now we have a few new issues to worry about.

Caden had a hard time coming off the sedative. He was really irritable which they said is common. And, since he had the no-nos on his arms, he couldn't get into his favorite position, on his side, to sleep very easily. He ended up crying almost nonstop for about 45 minutes before we left the hospital. Once we got in the car, he fell asleep and slept all the way home. I put him right to bed and he has slept pretty well since then. We have to go back into the hospital tomorrow morning and have the ph probe removed and return the equipment along with it. Hopefully we can keep Caden from yanking it out on his own before then.

It was a completely exhausting morning for me. I feel so drained. Getting the IV and seeing him after the procedure was the hardest for me. It just hurts to see my baby so unhappy. I know if I thought today was bad, I can only imagine how much worse the heart cath is going to be on the 27th. :( Thank you all for your continued prayers. We still need them as we wait for more answers as to what is going on with Caden. Not a fun time for us!

Here are some pictures of our morning:



Caden trying to remove his gown


Having his pulse-ox and blood pressure checked

The nurse listening to his respirations

Calming down after getting the IV in his arm

Mommy holding him in the procedure room

Asleep

Recovering

Waiting for Caden to wake up


Trying to sleep with the no-no's on