Well its official. Adam is off to Ft. Collins, CO for the week for work and I’m home with the 3 holy terrors…OK that’s not fair to Braden and Jacob since Evan seems to be the trouble maker these days. Sorry to go off on a tangent but what the H happens to kids when they turn 3???? I really think someone has possessed Evan and turned him into a whiney, mouthy, screaming, temper tantrum throwing monster. I constantly find myself praying for patience or for Evan to turn a corner and be back to his normal sweet self. I don’t know where I went wrong. Either that or he's losing his hearing because he will only stop if I yell…I’ve tried the staying calm and asking nicely but I can only ask him to do something 3 times nicely before I resort to raising my voice. I'm stuck. I can’t allow him to think he can act this way but I don’t like yelling at him either <<sigh>> any suggestions are welcome. I know everyone says the 1, 2, 3 Magic book is great but I need it on CD cause I definitely don’t have time to read anything in between begging Evan to quit yelling, jumping on furniture, or trying to smother his brother with the diaper wipe package. PLEASE tell me they outgrow this stage!!!!!!!
Anyway enough feeling sorry for myself! I thought I would recap Braden’s hospital stay. I was really hesitant to go back and didn’t think it would bring back all the memories of him being in the NICU but it did. Adam even thought so too. The smell of the hospital brought all those memories flooding back and even though Adam had been waiting for this overnight to get the ball rolling, I couldn’t wait to get home. In my mind I started having a small panic attack and thought about kidnapping him and getting the heck out of dodge. It was an all too similar feeling of when he spent the first 10 months of his life in the hospital. Braden however must have felt like he was back in familiar territory because he was having the time of his life. He really loved his cushy bed and was flopping his butt up and down bouncing all over his crib. He made friends instantly with every nurse and doctor up there.
His room was awesome! Definitely like a small hotel room…so 3 times the size of his NICU room. He had a DVD player, TV, CD player, fridge, and his own bathroom with tub and toilet.
He had a great view from his room too. There was the skyline of Des Moines and a beautiful garden area between the wings of the hospital.
Adam had training in DSM all day so I hung out at Blank with B. They had him scheduled for his bronchoscopy at 2 so I as able to feed him around 8 and then they came in at 12 to start trying for an IV. I had warned them in advance that Braden has craptastic veins and he proved me true to my word. 3 different nurses came in “looking” for good veins and were unable to find any. They attempted 1 in each foot, 1 in his arm, and 2 behind his ear and the blew all of them. I felt horrible for Braden. He was so hot and sweaty and I think was more scared of the fact that they were holding him down than he was worried about being poked. Finally, after failed attempts by the doc, 2 nurses, and a flight nurse they gave up and gave him some Versed in his G-tube. The pulmonologist resident was going to do the scope until she found out he was getting Versed so she said she wasn’t going to do it unless he was sedated so the pulmonologist did it.
The bronchoscopy looked good and his doctor thought that he just had a spot of malaysia just below the end of the trache and when his trache collapsed it didn’t collapse completely so he said that was promising. He was going to talk to our ENT to see if we could get a custom trache made that would be a tiny bit longer to hopefully so past that floppier part and help stint his trachea open. After that they gave him a break and let him eat. He quickly fell asleep after that.
Adam and I decided that while he was out we would try and go out to eat. We had a great time but when we came back we found out that Braden woke up shortly after we left an freaked out. The nurse thought the mixture of coming out of the Versed and waking up somewhere strange and not knowing where we were probably freaked him out. She said he cried pretty hard for about 15 minutes and then she rocked him back to sleep and finally had to put him back in bed cause “his head got too heavy to hold” and then he woke up shortly before we got back and didn’t “freak out as bad the second time.” Broke my heart a little bit poor guy :(
Daddy stayed with Braden that night and gave him a bath before they set him up with the sleep study. They had a little bit of a male bonding moment :)
I headed back home to spend the night at home and Adam said they came in after 8 to get him set up with all the wires for the sleep study. The plan, as we understood it, was to get him hooked up and then start SLOWLY weaning him down on his settings to see how he tolerated the changes since he “rides” the vent at night and lets the vent do all the work. Turns out they came in and immediately switched him to CPAP and took away his breath rate (which is normally 25 bpm). I'm not sure what they expected to happen. Thank god I wasn’t there because when Adam told me this in the am I was furious that he was put through that! Adam said he immediately told the RTs to take him off CPAP as he was working way too hard and put him back on his original vent settings and if they wanted to try and wean him to do it slowly. They obliged by coming in and turning him down every hour. Despite the fact that he was struggling they continued to turn him down as Adam argued all the while the RTs said “he’s SAT-ing great” despite the fact that he was breathing twice as fast, retracting, and being jerked awake because the vent wasn’t triggering and giving him a breath because it turns out, the RTs made the vent LESS sensitive instead of more. ARGH!!!!! Adam also asked if he could do CPT to break up the gunk in his chest and the RT said No and then attempted to suction him, which caused him to wake up and freak out because he was no longer getting the pressure support he was accustomed to, caused his trachea to collapse and spell needing to be bagged. FINALLY after that the nurse looked at the RT and said “ENOUGH! You aren’t doing anymore.” Adam told them to end the study and put him back on his original vent settings and the RT has the nerve to say “He was doing really great we should try CPAP again.” WHAT?!?!?!?! Listen-don’t try and make a name for yourself with my child OK? He’s not some kid who comes in with RSV who can be weaned off a vent in a day. He’s been on a vent since birth…don’t you think we’ve tried this a few times before now? Come on! The nurse just looked at the RT and said “you are not doing any more to him on my shift!” Thank god for her and Adam…I was a wreck when he recapped this for me so I can’t imagine what I would have done had I been there! Poor Adam didn’t get any sleep either and had to go back to training all day that day.
Adam and I both made sure that the resident and doc didn’t not make that drastic of changes to his settings. They did go much slower and dropped some of his settings to see how he would tolerate them. I can’t recap them to you as Adam is the expert in this area so I will have to wait till he gets back with those. I think it went from a pressure support of 25 to 20. Same with the breath rate, and a PEEP of 5 from 10. We will see how he handles these throughout the week.
Later that morning the RT came back to do his CPT and suction him. I think from now on we will just say that if we are there we will take care of all his cares. I sat there and literally watched her CPT him on FULL BLAST and then ask “why are you crying buddy?” I was like…uh turn it down notch you are going to vibrate him right out of his crib, THEN she suctioned him by threading the ENTIRE suction catheter down his trache! I was like “WHOA WHOA WHOA!!! You only go to the yellow line.” All the while Braden is coughing, gagging, and crying. I wanted to ask her “what are you trying to do? Suction his rectum?” Dear god why you would thread that thing that far is beyond me. I didn’t let her touch him the rest of the morning….geesh I have to change the subject soon. I’m getting all flustered all over again! >:< It certainly made us appreciate our RTs from the NICU…whom I angrily texted to right after that (sorry girls I needed to vent to someone who would understand)
After that whole debacle we were scheduled to do his swallow study. I wasn’t too anxious for this considering how the night and morning went. Braden of course had had enough by this point and was in no mood to have food in his mouth but he pulled through. Theyput him in a tumble form chair and had my squirt some pediasure with barium in his mouth and we anxiously watched it go from his mouth right into his throat!!!! AWESOME!!!! The OT was impressed and said even though he was crying and throwing a fit he managed to protect his airway at all times and nothing entered his lungs. Everything he swallowed went into his stomach. She said some did go up his nose but surprisingly less than she expected for a kid with a cleft in his soft palate so she said we could start trying some feeds (more like tastes) by mouth as he tolerates. She suggested working hard on desensitizing his mouth/face area before trying to put food in his mouth as we want as positive experience for him as possible. We want him to WANT to eat and NOT associate food with negative feelings. She also suggested we puree out own food instead of using baby food because “real” food will have more taste. She also said to play around with spices (cinnamon, cumin, chili powder, hot sauce, pickle juice, lime, lemon) to give his taste buds a “HEY! That was interesting…I think I might want more” attitude. She said kids who have oral aversions generally need food/tastes with more of a “punch” to get kicked in the right direction. I tried this yesterday with Ranch. I put a little on his bottom lip and DIED laughing watching him frantically lick his face for more. SO maybe we are headed in the right direction there. I know his day nurses have been working really hard with getting him to let them touch his lips/mouth so hopefully with more repetition he might allow things like a spoon/syringe in his mouth. She had a ton of great suggestions and was super nice to work with so that made the trip worthwhile.
She also hooked us up with an in-line passy muir valve (I’m sure I spelled that wrong) This is a one way valve that allows air from the vent in and forces Braden to push/exhale the air up through his vocal chords and out his mouth allowing him to speak. We will have to keep practicing with him on this as he isn’t quite used to the pressure change and putting it inline results in him coughing and popping it off his vent. She said this isn’t uncommon and gets better with time. I CAN’T wait to hear the full range of his voice! Of course we won’t push it until he’s ready!
So…that was our trip in a nutshell. I think the boys were excited to see us and Braden was excited to be back with his brothers. BIG thanks again to my mom for coming down to watch them. Anyway I know I’m ending this abruptly but I should head to bed. Big prayers for all the people in Joplin, MO and anyone with friends and families affected by that tornado.
Braden petting Squeak and loving it. I can’t believe she let him touch her. Shows you how desperate for attention she is. Probably helps he’s the ONE child who doesn’t chase and screech at her maniacally!
Snuggling his dinosaur from his favorite nurse Katie from Dr. Flores office. She came to visit twice while we were there.
Evan found out it pays to have a little brother around. Jacob pushes the fire truck and Evan sits back and enjoys :)