Wednesday, September 22, 2010

Would you join me...

In praying for a sweet little family that I have come to "know" over the past weeks? An aunt of a child born with hydrocephalus contacted me telling me about her sweet niece, Seeley, that had been born in Omaha 10 weeks ago. She found my blog through Michelle's blog and we had been emailing back and forth for the past 8 or so weeks. Recently Seeley's mom, Lori, had also commented on my blog. They have not had the most positive stay in the NICU, but after 9 long weeks, the plan was to do a g button/fundoplication surgery and she would be able to go home within a couple weeks. I was cheering with them.

The surgery was Monday, and I recieved an email from Seeley's aunt today saying that Seeley had contracted an infection from the surgery and went into cardiac arrest early this morning.. They were able to bring her back after 45 minutes, but the damage has been done, and they have said that Seeley is now "brain dead. The parents will have to make the decision to let her go. This absolutely breaks my heart. It reminds me of how quickly things can change.

If you are so inclined...would you join me in praying. I know the family would greatly appreciate it!

Thursday, September 16, 2010

Okay.... I haven't updated in a while. Some times it feels like the longer I take between updating, the harder it is to blog again, and with facebook it is sometimes easier to give a 3 sentence update and be done. Anyway...
{disclaimer: there is much talk of mucous, vomit and diarrhea in this post. Continue reading at your discretion}

My last post was on the 7th (a Tuesday). Matthew was still doing a lot of vomiting Wed. and Thurs. and then when I came home from work on Thursday evening, Matthew started vomiting again. I went in his room and he was throwing up blood. And he couldn't stop. Then he started having diarrhea, and within a hour and a half he was still vomiting blood and there was also blood in his stool. We called his GI doctor and he told us to head to the hospital. We went to Omaha, and once we got there he continued to vomit for over 2 hours. It was horrible. His feedings were still going in his J tube (his small intestine) so it didn't make sense why he was vomiting. They had me stop his feedings anyway and they started IV fluids. We were admitted in the early morning hours on Friday. It was decided on Friday to let his "gut" rest for 24 hours and see if the vomiting subsided. Like magic, about 2 hours after the feedings were turned off, the vomiting subsided and he was able to rest most of Friday.
  • Saturday: the decision was made to start pedialyte to see if Matthew's body would tolerate that. Things went perfectly. No vomiting, and he was happy.
  • Sunday: During rounds we decided it was probably best to try to take Matthew off the ketogenic diet. We had made a plan with our Minnesota Epilespy docs that this would be our next step if the vomiting continued. Within 1 1/2 hours after starting the formula that would be used to help wean him from the diet, Matthew started sounding very mucousy in his throat and then he started vomiting. The diet was stopped again, and pedialtye restarted. The doc's decided Surnday evening that we would start 1/2 strength "weaning formula" 1/2 strength pedialtye. All evening and night he was so mucousy and started having diarrhea again. I spent most of the night suctioning his throat so he could breathe past the mucous. In the morning, he starting vomiting again.
  • Monday: With the start of him vomiting again, his food was again stopped and pedialyte started. How frustrating. I'd done some research on soy (which is the main ingredient in his formula) and everything I read said that increased mucous was a sign of a soy allergy. I couldn't get it out of my head that maybe was allergic to soy and that is why we've always had such issues with vomiting since the start of the diet. And especially since it was now going straight into his intestines and not mixing with stomach acid that maybe it was really affecting his body. So I discussed this with the GI doc's. They only raised an eyebrow at me. They didn't quite believe me or buy my idea. I didn't care though. It made sense to me. They did think it would be beneficial for us to try to go off the ketogenic diet cold turkey and try a "elemental" formula. This formula has no soy or dairy added, and the proteins are broken down to help him digest them. They would start 1/3 strength in the evening. The rest of Monday went well. He did well on the new formula. No vomiting, no mucous.
  • Tuesday morning we went to 2/3 strength formula. The doctors said if he would tolerate this, he could go home. Six hours into the formula, he was doing beautifully. We got to go home.
The only bad part now, is we are seeing a LOT more seizures. Which in a way is good, because I was questioning whether the diet was working (it was doing some that we can't go back on far as I know, you cannot be on the keto diet allergic to soy and dairy)

We have started a new seizure medication to help with the seizures, but it will not be up to full strength for 3 weeks. It's hard to see him have up to 15 seizures a day. The weird thing is though, that he is SOOOO happy now, he is vocalizing again, which he had all but lost on the keto diet (I don't understand that, but we do know it not a "vocal seizure"; he is doing it response to us talking with him)

We have seen essentially no vomiting. The last two days, in the morning, he has vomited, but it is quick, and he doesn't continue on for 20 + minutes.

Matthew's arm is doing much better. It is still sore, and you have to be careful how you touch it, but he has been wiggling it out of his little homemade sling, so we made the decision today not to use it anymore. He seems to do okay with that. We aren't having to give him pain medicine around the clock either.

Matthew started private PT up again this week. I will try to post about that later. I think it's a good fit. I was nervous about starting outside therapy again, but I think this will be a benefit for Matthew.

So that, I believe, is all of our life updates for the last week and a half. I promise, I will try to post something next week that doesn't have to do with hospitals. I am tired of living there, and I think Matthew would agree :)

Tuesday, September 7, 2010

The last 5 days....

{ Warning...this is incredibly long...that's what I get for not updating for'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.