Update on Dillon

Thursday around 4:30 am we got a call from the hospital saying DIllon had a 30 minute seizure and that he was now in respiratory distress and being sent to the PICU. I started telling them it was NOT a seizure... he was wanting to be moved or comforted but his extensions were NOT seizures.

Josiah and I are tired of this happening - this is the 4th time he has been admitted in a row where they ignore what we tell them and do what they want. Last time we got an EEG done to prove it, and it was exactly as we said. Those extension movements are purposeful. So at 4:30 am we woke Jay up (we had only gone to sleep around 1am) and came to the hospital.

We got to his PICU room to find about 10 people around him and the doctors wanting to insert a breathing tube. I asked them to just give him some time to calm down. He was moaning and groaning from all they had done to him. They tried to get an IV and failed, they did put another one in, they gave him 3.5 doses of a seizure drug, they stuck a nose trumpet (a large straw) down his nose past this throat, he was bleeding from his nose, they had him in jaw thrust, etc. They knew we were not happy about the seizure drugs and agreed to give him a few minutes. Sure enough as soon as they left him alone he calmed down and didn't even cough for over an hour.

I went down to talk to his nurse and the residents who administered the drugs to find out directly from the source what happened to make sure it was the movement that I know is NOT a seizure. Here is what I was told (see how many contradictions you can count!):

Main Nurse: She had NO idea how many times he had the movements that I told her were seizures during this 30 minutes. I asked over and over and over for a ball park idea of how many she saw. Her answer: I don't know, I have no idea. (What on earth is she putting in her nurse's note if she didn't bother to count at all??) Finally after I pushed her for an answer and wouldn't stop she finally said 2-3 in a ten minute time. (Hello! I told them he has 30-40 in a day so 2-3 is not a lot! Especially since I told them he does have clusters - so when he has one he usually has several in a row.) She told me Dillon's oxygen was in the 70's. I asked if it was a real read because at home if he is tight it might say 60-70% but as soon as you get him sitting it jumps to 99% or so, therefore it was not able to pick up a good read with him that tight. She told me they had a beautiful wave on the oxygen reading so they KNOW it was a real read.

Resident 1: She was quite mad at me for questioning their decision at all and didn't understand why I was upset. The resident who admitted Dillon walked up to us when she was talking to me and was asking where Dillon went and she was yelling at him to "just leave" and that she would talk to him later but to just leave. He looked at me very confused because he was the one who thought Dillon was ready to go home by Friday morning. I asked this resident who was in the room if anyone in this time pulled up his neuro report to see what IS and what is NOT a seizure. She said "30 minutes isn't as long as you think." Again I asked if someone, anyone at all was trying to look at the reports. Finally she said no. She said his heart rate was over 200. I asked did anyone look to see if he has a cardio report on file because his cardiologist has cleared him to be over 200 as long as it isn't for months at a time. She refused to answer me and I point blank told her to stop side stepping my questions and give me a straight answer. She still wouldn't so I said "So that's a no?" Finally she said no, no one tried to see what his cardio records were.

Senior Resident: Again, he was quite annoyed with me for questioning him (and writing everything he told me down) But by the end of our conversation I think he at least understood why I was upset at this happening AGAIN. But here is his version of what happened. Dillon was extremely tight. He said he knew that the "scissor motion" that he makes with his legs is not a seizure, but this wasn't a full scissor motion - this was a thumping. I asked did you think of the fact that he has a dislocated hip and that he just may not be able to do the full motion... no. He told me Dillon's heart rate was in the high 200's. I asked what does that mean 280?? He said 240-250. Then later in the conversation he said 260. So I asked which is was. He said he wouldn't give me an answer that I could look at the machine when it came back from the PICU to see if I want. He told me Dillon's oxygen was in the 70's the whole time.

Helping nurse: Said the whole time she was in the room she never saw a single time when he had the seizure movement that I described to them... NOT ONE! She was the nurse who recorded the vitals and told me his heart never went above 215. She told me that majority of the time this was going on the machine was not even picking up an oxygen read at all! Not that it wasn't a good reading - but that there was no reading at all because he was so tight.


Needless to say I was NOT happy. When I was going over everything with the neuro resident he finally said "So we have no idea what really happened." And that it is like a bank robbery where there are 100 witness and everyone's story is different. So then the Attending Neuro came in and said that Dillon is scheduled for more drugs he wants Dillon to continue to get seizure drugs. I said "no, there's no reason for them" He said that when his residents were in the room Dillon had two seizures and he tightened some. I was here! He tightened right after they had just been pounding on his knees, ankles, and arms to test reflexes. So I told him no to the drugs. Oh yeah, he also said that Dillon was Dilantin - which he NEVER GOT this trip, they used a different one. So the attending had not even read the record close enough to know what medicine they used! (After he left I asked the nurse when was he schedule to get these drugs again- he wasn't! The attending neuro didn't know what he was talking about again!) I asked him if he had read Dillon's last EEG report. He told me he didn't read the EEG. I asked again, "No, I don't mean the EEG, did you read the report from the lasts EEG?" "No." So here he is coming into our room, not knowing what drugs Dillon had been given, not knowing if he was scheduled for more or not, and not having read the last report even though he knew there was disagreements between if this was or was not a seizure!!!!! He ordered for another 24 hour EEG - so that this won't happen again if it isn't. I asked what good would that do - we did that exact thing last time and it didn't help at all. I asked if we have to put him on an EEG the moment his gets here every single time? Nevertheless he ordered for the EEG again.

They kept the nasal trumpet in Dillon with CPAP going through it. When they took that out on Friday he did great. His heart rate actually went down and his oxygen went up! He was on only 1-1.5 LMP with the nasal cannula yesterday and his CPAP at night. He did have to have a little more oxygen with the CPAP than normal though. Today he is on 1 L and doing great. They are trying to move him from PICU back to Pulm floor but there is no bed open at the moment.

Oh yeah - and just for anyone who was still wondering - Neuro came back yesterday and told me that NONE OF THE EXTENSION MOVEMENTS ARE SEIZURES!!!! Imagine that, exactly what I told them was proven right again! All his seizures were less than 10 seconds each! They didn't have a count yet on how many he had in the 24 hours, but I have requested the report so I will find out soon. We now have a sign posted above his bed that says what is and is not a seizure. We put on there what to do for him if he is in extension and to please read the neuro reports. Hopefully this will help. But I still don't want him here alone at night. I don't trust them, they do what they want. They don't listen to me. It is always at night with the residents that this happens. They haven't learned to trust Moms yet, they still think they are smarter than Moms and that we don't know what we are talking about. Josiah had to work last night so after 5 nights of very little sleep I got to sleep at the Ronald McDonald house with Jay while he stayed here and worked during the night. Oh the neuo told me they might still use these drugs - even if it isn't a seizure - just because he was tight. I asked them if they would walk into a room with a normal 3 year old that was red in the face, high heart rate, high respiration, tight muscles because he is throwing a temper tantrum in the middle of the night and drug HIM with seizure drugs. They said "no." "So why are you doing it to Dillon?" I asked. They had no good answer. I told them they need to learn to reposition and comfort rather than drug when a 3 year old is upset in the middle of the night.

We did get X-rays. Dillon's hip is dislocated. But Ortho told our docs that they didn't have time to come talk to be about how to position Dillon - that we should just figure it out based on how he tolerates it. HELLO!?!?! So our resident kept calling and finally got a ortho resident to come talk to me. But he didn't know much. He kept saying things like "But this is just my opinion, I'm not really sure, you should talk to an attending, that is just what I see in the X-ray but an attending might see something different." Great you're a help. He told me that no position will make it worse, but couldn't tell me what might be hurting him. He told me he thinks the hip has been out since birth and that he will have to have surgery in a few years to grind out the hip socket that it isn't formed right. "But he doesn't know for sure." He doesn't know if Dillon should have a lift under him in the stander or not - let me PT decide. But she doesn't deal with dislocated hips much so she already told me she wasn't sure. Ortheo should be telling me this. He thinks our patterning is ok - as long as he tolerates it. Is he not getting the fact that Dillon can't tell me "Ouch, or mommy that hurts"??? How am I supposed to know if he is mad that it hurts, that something else hurts, or that he is just mad that I am making him do therapy. I don't know! GRRRRR - is anyone guessing how frustrated I am by now?

Sorry this is long, I know people were wondering how we went from "we should be out tomorrow" - to the PICU for several more days. Please pray about this The senior resident that gave him the drugs told me about a program here called ICS which means that if he is selected for it when he gets admitted it would be in a different part of the hospital where the same team of 4-5 docs and nurses would always be in charge of his care. This would make a HUGE difference! The doctors would all know what is a seizure, what is not, what to do for his extension movements, etc. The only reason he went into resp distress is because of what they did to him. It was horrible and it was all unnecessary and it is the FOURTH time this has happened to him here. Please pray we would be able to get into this ICS so this doesn't keep happening to him. I have to talk to my Puml doctor - I am hoping I can find him Monday - and see if he can help me get into it. They are very selective of course in order for it to be what it is, but I am hoping they will let him in. He can't keep getting 3 doses of seizure drugs for no reason.

Please keep praying for us. Dillon had a fever of 102 yesterday, but that is normal for RSV. We are all tired and it is plain annoying to deal with this nonsense. I can't wait to come home. Thank you to everyone who has emailed, posted on facebook, and sent the CHOP ecards. It is encouraging to know that people are praying (in fact I am sure that is the only reason I have had the strength each day to keep going!!)

RSV and pneumonia

Dillon has RSV and pneumonia. :o( His fever has been good during the night and they have him on just 1.5 L all night. They tried in the ER and on the floor to put him on CPAP, but with CPAP he was needing 8+LMP! NO one understands that at all, other than he just doesn't want the CPAP right now. They have him on a IV antibiotic and know that we want to be able to take him home as soon as possible. They need to see him back to base line on his breathing (how much oxygen, interfaced used, and work to breathe) and able to be on CPAP again for the nights before he could go home. He was on the oxygen mask until about 6am I think when we were finally able to put him on nasal cannula.

We were brought to 5South08 around 2:30-3 am and didn't even get to TRY to sleep till 4 am. And then of course between doctors, nurses, medicine, beeping, coughing etc.... well we got very little sleep.

Josiah is leaving me his phone today, but I am going to try to get my room phone if people want to call. CHOP now has computers in the room so that is nice! And we have a private room so when I get Jay we will be able to be in here. I am going to call the Ronald McDonald House and see if we can get a room for tonight.

Dillon is in CHOP ER

About 8pm tonight we rushed Dillon to CHOP's ER. We had him on 10-15 LMP of oxygen to maintain 88-92 with a oxygen mask. (He is normally on 0-2 LMP nasal canula, but even on 15 LMP with nasal canula he was dropping.) He has a fever of almost 102. JayDonn has been sick with 102+ fever, coughing and runny nose.

Not sure what is going on right now. They are doing a chest X-ray and trying to find a vein to do blood work.

Please pray - will update when we have more info.

THANK YOU!

Oh - Lori has JayDonn for us tonight. THANK YOU Lori!!!!!!

Pictures!!

Some pictures that are long past due:


Dillon and Jay in their chairs. Jay does his school work in his desk and Dillon does therapy or eats when in his chair.
This is the stander I fought the insurance for over two years to get him. He finally has it! Praise the Lord! We were blessed to have equipment on loan until we got it, but these are fit exactly for Dillon with the all the right supports that he needs!
Playing while sitting in his chair.







Daddy and JayDonn on their bike. They love to go riding together. Jay says he is scared, but he really loves it!
The seat Josiah got him goes on the front instead of the back so he can talk to Jay while riding. Jay also thinks he can drive the bike this way.
We decided to set up the crib for the new baby tonight. Yes, it is very early. And yes, I am excited, but there is a reason for my madness... I don't want too much to change too quickly for Jay. I thought if we have the crib set up in Jay's room early he will be used to it and that is one less "change" that will happen all at once.

Here is Jay helping me wash the crib that was once his!
What a good little helper!
Dillon came up to help us too!
Ok so we are a little backwards from most people. Most people buy the first baby the new crib mattress, take the pictures of the Mommy's growing belly, etc. I didn't take any pictures of my belly with Dillon or Jay, but I am this time. Neither Dillon nor Jay got a new mattress, but this baby did. (Only because the other one was so old we threw it out after Dillon go this own bed, so we needed another one, but still....)
Daddy and Jay setting it up!

Jay's bed and the crib
Their dresser with a nice lamp Daddy put in their room. (Our neighbors leave their TV on all night pretty loud and Jay is scared so we have to have a fan on for white noise. This is why Jay created his imaginary friend, James. He wakes up crying for his fan to be turned on if we forget, so we just put it on every night.)

Of course Jay had to "try out" the new crib!
Dillon and Jay getting ready for their new baby brother or sister!

Hope you enjoyed the pictures. Have a great day in Church tomorrow!

The happenings at the Kuenzi's

Some things that have been happening around here at the Kuenzi's house:

1. One day Jay was looking at a wedding picture of Josiah and I and commented on it. So I told him that was the day Mommy became Daddy's wife. Then I asked "Do you want a wife one day?" He put his elbow on the table and his head in his hand and very wistfully said "I want a wife one day." Of course, Robin and I laughed so he kept saying it! It was adorable! I got a video of it... I can't wait to show his wife one day and even better - play it at his wedding!

2. Yesterday we did all of Dillon's therapy with him and his nurse said he was so tired last night that he didn't even wake up when she was feeding him!

3. When we took Dillon last Wed to CHOP to get fitted for his stander he was very mad. The PT didn't have the stander locked all the way so when I put him in the whole thing fell backwards and jarred him pretty good. After that he was breathing heavy and was not happy for the whole time. We walked to the elevator and as I put his coat on him, he threw up. On the way home he coughed the whole time, his heart rate was over 200 and he was breathing heavy. He had a 102 fever when we got him home. We gave him a breathing treatment and tylenol. I kept him home from church and let him rest with his CPAP on so he could breathe easy. I fed him very slowly and every hour gave him oil of oraganol. By the next morning, his heart rate was down to 115-140's (normal range) and he did not get another temp. He was better! I really believe putting him on the CPAP so he wouldn't have to work so hard and the oil help him! Normally he would have gone on an antibiotic, but he didn't have to again this time! Praise the Lord!

4. Friday our stander and chair were brought to our home! After over two years of fighting the insurance companies he finally got his equipment! What a blessing! I have had him in it 4 times since we got it and he is doing well. He stands for the first 5 minutes good and then starts to wake up and fight it. He is only in for 10 minutes for now.

5. While we were getting fitted for the stander we saw that Dillon's left leg is shorter than the right. They put a block under his foot so he would stand right. We had seen this a few times before but thought it was just how he was laying. We see the doctor on Feb 8 - I have to ask him to check and see if Dillon is getting scoliosis or if it is a hip problem. I think a hip issue would be easier to treat, but I don't know... I guess we will just wait to see what Dr. Gelman says.

6. Jay slept for 11.5 hours last night - with NO DIAPER! He was dry in the morning! He did great! He is growing up so fast! Robin and I were praising him and he said "Awww, thank you! Thank you guys!" What a crazy little kid!

I think that is it for now, I will try to put more of Jay's crazy sayings on here...

Have a great evening in church everyone!
Tiffany

Christmas and Ultrasound

First to catach up on Christmas 2009!

We had a great Christmas with just the four of us! It was the most relaxing Christmas I can remember. Jay woke up and came down stairs and saw the manger with Baby Jesus in it. We didn't have him in there until his birthday. He was excited about that. Then I told him to come look under the tree. He knew they were presents, but it was his next answer that was so sweet. I aske dhim who the presents are for "Dillon, and Jay, and Daddy and Mommy." He actually said they were for Dillon before himself even! I thought that was pretty sweet for a 2 year old.

On the 29th we drove to WV where Josiah's family was all together. His brother and his wife from Texas, his other brother and his girl friend from California, his parents, his sister, and us. We had a good time with them in WV for a few days then on the first we all came to our house. Even though my house was pretty full it was fun to spend time with everyone. Everyone was gone by the crack of dawn Tuesday morning.

Ultrasound!

The baby is so cute! I am supposed to be 20 weeks but the baby's head was measuring 20 weeks 5 days (oh no! big head!) We saw the baby moving around, putting an arm up over the head, she even got a picture of the baby opening his mouth while looking right at teh "camera"! Everything on the baby looks healthy.

And IT'S A ......

Ask the ultrasound lady - she knows - she saw but since I don't want to know she isn't telling! hahahahahaha

Here the baby's arm is over the head...

Here the baby is looking right at the "camera" in the lower one the baby opened his/her mouth and the gray area in the mouth is the little tongue!

Profile of the baby

Isn't life a miracle! This baby weighs only 12 ounces and yet has all the fingers and toes, has a little tongue, a beating heart, etc. It is amazing! It was neat to see the Baby moving it's little feet and wiggling around. So wonderful!! I love babies!

The bad news is our doctor is no longer doing OB as of Jan 1 and the 4 doctors who took over his practice don't go to Lehigh where I want to deliver. :-( The hospital they use is even a little further and you would have to go through Allentown traffic to get there. Plus, Lehigh has a level 3 NICU St Luke's has a level 2 NICU.

So we can find another doctor and still use Lehigh or find another doctor and decide if there is another hospital closer to us that we want to use. Please pray for special wisdom in making these decisions - as you know... who you go with can make a HUGE difference... a life and death difference!