Friday, July 10, 2009

Can't even take off a bandaid anymore

******Sorry about the delay in posting this. I started it a while ago and just finished it.******

Most everyone knows this already but for those that don't, Malachi was in the hospital for two days. On Wednesday morning he had his worst seizure yet. He seized for about 3 1/2 - 4 minutes. After that he was gargling and struggling for breath, he turned blue around his lips. He normally would be calm for a few seconds after seizing and then cry for a bit and then be passed out for 20-30 minutes, but it didn't happen that way this time. He calmed for a bit, then cried, then calmed, then cried, and this cycle happened maybe six times. He also vomited during that time. Right before he vomited I called 911 - this was a very unusual seizure process and with the blue lips and all I decided it was a good time to call the EMTs. We got to the Pediatric ER at about 10:00 at Inova Fairfax Hospital. John was on his way, he left work at about 9:30. Unfortunately I took the car keys so he couldn't go home to get the car first.

By the time we got to the ER he was fully concious and seemingly fine. His vitals checked out, and if someone was just looking at him and didn't know his history or what happened earlier that day they would think us crazy to have him brought in. However, they did know what happened and they did know his history and it was decided to have him admitted after the ER Dr's consulted with the on call Pediatric Neurologist. Before he went upstairs they decided to start the testing and get his bloodwork done there. Having the IV inserted into his hand to get the blood was the most traumatic thing I've seen done to him. They had to swaddle him to keep his body still. He was crying out for me and asking me to hold him, it was so hard for me to not weep with him.

After he was admitted at about 12:30, his history and vitals were taken by a Resident and during that time the Attending came in to check him out and tell us about the system of the hospital. He told us that the Drs on the floor were going to confer, make a plan and let us know what it was. A couple hours later we still hadn't heard the plan, but someone came in to do something - I wish I could remember what. John probably remembers though.

After a while more, someone did come in and tell us the plan. The pediatric neurologist had a colleague of hers look at the EEG done one Tuesday (the ped. neurologist on call just happened to be from the office we went to for that one) and everything looked normal. They wanted a more in depth look into his brain though, so they called for an other EEG. They wanted to try to get it done over night, so they were chasing down the technician who does that to make sure he didn't leave before he started. They also said that they were ordering an MRI for the next day. He would need to have an IV put in. After that was told to me, I decided to go home and shower and change, I was still in my pajamas from the morning. I took the metro home, showered, changed, grabbed p.j.'s for me, and clothes for Malachi to leave the hospital in (he went in the ambulance in nothing but his underwear). I also grabbed his blankie and elephant for comfort.

When I got back they hadn't put the IV in - dang. But they did it in a way that I'm very happy about. The Pediatrics floor has a program in it called Child Life. There's a staff working on the floor during the day to man a play room and help kids with the procedures that are going to happen to them. A young woman, Liz, came in to tell Malachi about IV's and have him do one to a doll that he named and colored a face onto. After this we went into the "Jungle Room" to have the IV placed and the Liz came in to help. It was such a different experience. He did cry a bit, but only a little bit. I was so, so thankful for Liz.

After that we ate dinner, and shortly after that the EEG technician came in. He came in at about 6:30. What a horrible experience. The leads for this over night EEG were glued onto his head. To do that the technician had to use a long tube from an oxygen pump on the wall and would dry the glue with that, except instead of just letting the air blow on it, he would drag the end of the tube on the wet-glued gauze, but it was quick and a lot of times he hit Malachi pretty hard. Malachi was miserable and it took him three hours. He would often blame Malachi for a lead not being on right, or coming off and while sometimes Malachi did move and cause it, it was apparent that often it was his fault. It made the experience very frustrating for John and I too.

After that was done, John went home to get some work done and to sleep. Malachi and I tried to sleep, and Malachi did alright. He slept from 10-2 when the nurse came in to hook up some IV fluids. He actually slept through that, but then a roommate came in at 2:15 and woke him up. The poor boy was young and had had multiple seizures that day. The ER had so over medicated him that he couldn't sleep, or walk and his speach was slured. He didn't sleep at all and Malachi didn't fall back asleep until; after 4 He woke up at 6am on Thursday.

We waited only a little bit for the nurse and Pediatric Neurologist to come see him. The neurologist said that there wasn't any seizure activity recorded on the EEG, and he passed her neurological exam. We were just waiting now for the MRI. At that time, he wasn't on the MRI schedule, but the DR on the floor made it her personal project to get him in there Thursday.

At 8am Malachi's nurse came in and said that his MRI was going to be in about an hour, so they're trying to find the EEG technician to get the leads taken off. He came in about 15-20 minutes later and Malachi started crying immediately. I promised Malachi that he wasn't going to use the air that time. He saw Malachi's misery and got the leads off pretty fast. He scrubbed some of the glue off, but couldn't get it all. That was fine, I had my baby back looking mostly normal! Almost right after he was done with that patient transport was at the room ready to take Malachi to MRI.

So he sat on my lap on the wheel chair on the way down to MRI which was on the 1st floor, but all the way in the back corner, it felt like a basement. We had to wait a bit, but then an MRI technician came to talk to us about the process. We then waited a little bit longer for the room to be emptied. When I got in, the anesthesiologist explained that he would put the anesthesia in through the IV and it really didn't take long for Malachi do go down. It was actually a very disconcerting thing for me to watch.

He was taken into the MRI room and I went to get breakfast. I bough a bagel and banana and brought it to the waiting room. Being alone there was the first time I let myself get emotional. So I allowed myself a little break down. I didn't want to get too emotional because I knew that they would bring him out any minute and I didn't want him to see me that way.

We went upstairs after being in Pediatric Recovery for a few minutes. Malachi kept his apple juice down really well and then after a bit of a rest ate his cheezeburger almost all up. I didn't want him to eat the whole thing because I didn't want him throwing up, but he never did. We waited for a couple of hours and the MRI showed nothing, so after that we waited for just a little bit longer and the medicine they ordered came up. I gave that to him and then we were released.

It was so nice to pack up and go home. I had to go down to the pharmacy to get his Keppra (anti-seizure) medicine. But as we were sitting there waiting I was falling asleep. When we got home we had a small snack and went to bed. We were both so exhausted.

I'm sorry if this sounds jumbled, or if there are simple grammar mistakes. I'm very sleepy still from pregnancy and we haven't slowed down since we got home (Morroccan dinner on Thursday night, trip to the Zoo and Baby shower on Saturday, large shopping day yesterday, and today we're puppy sitting - EXHAUSTING!).

Monday is Flag Day! That's the day we find out where John's being posted. I wont be posting the location on my blog for a week. You'll have to check out John's Blog in order to find out. You should check it out anyway. You'll find out lots of good information on it.


Terri said...

I am SO sorry to hear what is has been going on with little Malachi.. quite the emotional ordeal. I will be praying for him, you and John as I know how things can be with sick little ones. Especially being prego at the same time. Hope you guys are doing well.
Love in Christ,
Terri (Anderson) Schelkoph :)

Sara said...

Thank you Terri. We've been doing very well since these horrible couple of days. Malachi hasn't had any seizure activity since then. Praise God!