Tuesday, September 7, 2010

The last 5 days....

{ Warning...this is incredibly long...that's what I get for not updating for awhile...it's been a crazy couple of weeks}

Were incredibly taxing for our family and especially Matthew. Let me back up just a bit first. To the weekend of the 21st. Matthew was having increasing seizures and in collaborating with his doctors in MN, the decision was made to go to the ER 2 Saturdays ago to get IV fluids and rest his belly. We stayed through the weekend and saw GI on Monday and we made the decision to try a GJ tube for Matthew due to his increasing vomiting and also not gaining any weight since December. His food can go in the "J" port and that will allow him not to vomit his formula because that enters the small intestine vs the stomach. We will still work on oral feeding and giving him some food in his G portion of his tube to keep his stomach active. But we need to put some weight on the little tiger.

All was well and good for a week. Then, last Saturday (the 28th) Matthew started vomiting more again, but this time is was just mucousy..and then he couldn't stop. He would just retch; which is not fun to watch either. Each day it got significantly worse. Tuesday night after I got home from work, I stayed up all night long with him. Wednesday morning, we took him to the GI's office for them to check him out. He consulted with pulmonology because he was thinking he may have pneumonia. His chest xray was normal. We know that whenever Matthew gets intubated (as he was during the GJ placement) that some reaction is set off in his body that makes him produce massive amounts of mucous; which he has a hard time dealing with. I'll save you all the rest of the details; but suffice it to say, it's not fun for Matthew.
So Wednesday left us with little answers and I took off for work again as soon as we got home from the dr.'s (with no sleep yet). When I got home shortly after 1 am, I could hear a weird sound coming from Matthew's room. I ran in, flipped on a light and he was choking; on his own vomit, and Steve was sound asleep in bed. I quickly flipped him on his side, cleaned him up and got suctioned out. He (and consequently me) then spent the whole night awake, he couldn't quit vomiting.

Thursday, he woke up with a fever. I threw in the towel. That was it. We were headed to the hospital. I was sure he'd aspirated the night prior and had pneumonia. We were admitted to the hospital on Thursday. Thursday day and Friday night were both pretty rough for him. He was on and off oxygen. He threw up a lot. We started a new medication to help with what is known as "cyclic vomiting". It makes him drowsy, which is not especially good when he needed to be alert as possible to cough and breathe. When he was on oxygen Friday night, the on call Dr. was called and she ordered lab work and a chest xray for the morning for Matthew.

Saturday morning, Matthew looked like a new kid. He was off oxygen and had slept fairly well. Lab came to draw blood and then, THEN xray came. Matthew HATES xray's; because he hates being held down. He HATES his arms being held above his head. I immediately jumped up and started talking to him and getting the head of his bed lowered so they could do the xray. I said, "let me know where you want me to be". And the tech immediately replied, oh you can just go over there {pointing to my bed}, we will be done in a second. I chuckled and sarcastically said (cuz I was WAY overtired by then) "well, then let me know when you want my help, because he is very difficult to position and doesn't like his hands being held over his head." She again, quickly replied that they didn't even bring me a lead vest, so I wouldn't be able to help. I had smoke rolling out of my ears. I stood up and walked out of the room for a second. I went to the nurses station to put my dirty breakfast tray away, and told his nurse that they wouldn't let me help. She rolled her eyes and said, " I don't know why they do that". I then went back in the room and they were still struggling with Matthew. He was crying and arching and twisting the best he could. The tech had his arms pinned above his head and the other tech was trying to position the film on the side of the bed. They finally got the picture they wanted and then had to do another with the film under his body. They positioned him for that xray, and he was still screaming and arching. The second tech would just grab his right arm and pull him with it towards her to position him. I'd had enough. I asked them if they were done. They said they were and I picked up Matthew. I held him and was comforting him and they offered to help me get him back in bed, twice in fact. I couldn't even look them in the eye. I told them no, I was fine. I just stood there and held him until he was almost asleep. When I layed him back in bed, his right arm just flopped on the bed. I noticed it right away. I took his limp arm and tried to lift it over his head. He didn't fight me with it, he just screamed. I ran and got his nurse and showed her. She immediately called radiology.

They were back in our room in 15 minutes. The had 3 techs this time. They said the pictures didn't turn out well, and inquired about his shoulder. I told them (it was more of a yell) that they were not touching him. Even if it meant no xray. I would NOT let this happen again. Both tech's were a little defensive at first, but I stood my ground. They WOULD NOT touch my baby. NO WAY. They offered to let me position him this time (hmm...funny) and a different tech would help me. Both tech's profusely apologized, but I was furious. As soon as the scan was over, Matthew immediately fell asleep.

The pediatrician was sent to our room next. She said it was a good sign that he didn't cry when she touched his arm, even though he was asleep; but order shoulder and arm xrays just in case. She said we could wait till he woke up to do them. She said if he had a good afternoon we could go home in the evening. Both he and I took a three hour nap.

When I woke up, I felt a bit sheepish. Certainly there was nothing wrong. It was probably just sore. We went down for the xrays, and the first techs were no where to be found. We had 4 (!!yes, 4!!) techs in the room, and they were doing anything I asked. I did all the positioning and they were super patient with him. (I'm sure they'd been warned). Two hours later the pediatrician again stopped by and asked how we were doing. From a vomiting and oxygen standpoint, he was doing well, but Matthew still wasn't moving his arm and he had whimpered when we did the xrays of his arm. She went to go look at the xrays and when she came back she sat on my bed and told me the horrible news. Matthew's humerus was broken (the big bone of the arm) and up by the shoulder. I was livid. She said she would talk to the orthopedic docs immediately and let me know what they said.

I called Steve, and if I thought I was angry, it didn't even compare to Steve. After we talked, I told him we'd be home soon. As I was packing and waiting to talk to the doctor again, Steve showed up. He was so angry. I've been married to the man for 14 years, and have NEVER ever seen that side of him. Papa Bear was here, and it wasn't good. After much talking on his part to the house supervisor and the administrator on call, he was able to speak to the tech who we believe did it. He wanted answers. I'm not sure he got the answers he wanted, but he got to at least talk with her. We was angry, but remained pretty calm. His words were strong though.
Being it is was the holiday weekend, I know not much will happen until today. I would imagine I will be speaking with someone from the hospital today.

The ortho said he would splint it on his own, or we could wrap it to close to his body. They let us go home and said we can follow up with ortho in a couple weeks and it should be completely healed by then.

So that is it, in a really big nutshell. We have been home two days, and while he is fairly uncomfortable when we move it, he doesn't exactly like it wrapped either. I am still trying different ways to wrap it to see if he'll tolerate it better. His vomiting has majorly decreased and he is completely off oxygen. We've seen a couple smiles even.

I get sick to my stomach when I think about what happened. I should have just jumped in there and made them get me a vest so I could help. He always does better when I help. But, I can't beat myself up. It wasn't my fault. They were pretty adamant they were getting the xray, no matter what it took. Unfortunately, it cost Matthew. I can guarantee you it will NEVER happen again. And I hope the tech has learned a HUGE lesson. I know the hospital will do a full investigation, and I will make sure of it.


Anonymous said...

Hey Jilly-I know it's been a really hard weekend for you, if you need just a little chuckle, please watch yourself getting flushed at the waterpark, it ALWAYS makes me laugh!!! Kiss Matthew for me!

Tyler said...

WOW is all I can say. I can't believe they did that and that they still have jobs. Poor Matthew :(
I hope he starts to tolerate the wrapping and he starts to feel better.
I had to laugh at Jaime's comment. It certainly made me chuckle again.


Tara said...

I am so sorry about that happening to the little man. Michelle was dropped and it broke her tibia. I was livid and never got the chance to yell at the woman who did it. I hope and pray that his arm heals.

Laura (Harmony's mom) said...

This makes me literally sick to my stomach. I am so sorry about Matthew's arm. You know that it's not your fault logically, but don't beat yourself up over it anyway. That's horrifying. I'm assuming that was at Children's? I'm just speechless.

Carla said...

I can't believe it!!!! I literally just got up off my knees praying for Matthew. I can't believe a tech would be that insensitive to you & Matthew & that forceful for an x ray!
Don't worry about feeling sheepish. You & Steve did exactly what needed to be done & said so that somethjing like this never happens again. Its ok to have a big sticky note in Matthew's file about a momma bear. I know my son has one about me!
Praying you all get some relief & that Matthew's arm heals perfectly.

Keeslermom said...

My heart aches for both you and Matthew! He's such a precious boy, and deserves to be handled with respect, not like an object. DO NOT feel guilt about this! You did nothing wrong. Let the guilty feel bad, and you take care of yourself and Matthew.

Kristen said...

I get sick to my stomach thinking about it too! Don't beat yourself up...you're smart to know it wasn't your fault. I'm so happy he's feeling well enough to smile some. I pray he continues to feel better and better each day.

Michelle said...

Thanks for posting the full details. I can certainly see why you are beyond angry - this wasn't a simple accident, it was someone who wouldn't listen to a Mom and there is just no excuse for that.

I am so happy to hear that he is giving a go at smiling again - he has the most amazing smile. My heart just melts every time I see that big grin.

Gretchen said...

Prayers for Matthew to feel better, and I am sure he will, safe at home.

Anonymous said...

i know someone who has a son who has had his stomache sewn shut? he also vomited and vomited and lost weight and it got to the point where he was sooo dehydrated and wasnt taking his meds cause he was vomiting and so seziures occured very badly, so they gave him a mic-key button/peg and they had to sew the top of his stomache so he gets all the nutrition now and is putting on loadsss of weight. it does mean he wouldnt be able to swollow even his own saliva but it can be reversed if he got better.

hope he gets better and his arm heals quick, poor little guy cant imagine what you must all be feeling right now. i really think you should talk to the docs about his stomache being sewn even if its for a little while just so he can gain weight and it will give his poor thorat a rest!!! hope all goes well. all the best.

Lisa said...

So I have read your updates on facebook about this, but this was the first time that I read all the little details.



Suzanne W. said...

Poo little man! I have to say atleast we're "frequent fliers" at our hospital and I've never been denied the right to help hold my son. I hope he's feeling better and that those techs are severely reprimanded. A parent should not be denied the right to help with a special needs (or any) child...that's why techs are supplied with vests.

Quinn's Diary said...

HEy - It's Susan - Quinn's mom - Quinn and Matthew have the matching chairs - wow, your journal got me crying again! We have had a hard week too as Quinn has been sick and I've been a mess, but that seems to be nothing compared to your week! I'm so sorry! We will say some prayers for you all!