Sunday, September 27, 2009

Round Two

Mitchell has been having what look like little seizures. He had 2 last Friday and they slowly increased to 5-6 a day lasting about 30-60 seconds. So Tuesday Jansen had his 2 year old check up and we decided to bring Mitchell along to ask about them. Well, luckily he had a seizure in front of the doctor, who told us we needed to get that checked out right away, and wanted us to go to the ER. Not wanting to have to come back another day, I said "well Jansen only needs a few immunizations, so lets get those taken care of first." Dr. Terry must think I'm an idiot. He told me at the end of the day, Jansen would be fine, but we need to leave RIGHT now for the ER and he was calling them to tell them we were on our way.

We got there and they ran a bunch of tests, (a cat scan, blood work, urinalysis) and admitted Mitchell. We go up to the PICU and Mitchell's room has a crib and a chair for me. There is no bed, and the chair doesn't recline! I asked his nurse 6 different times if I could get a bed, a different chair that lays back, another chair to push the two together... no luck! In fact what she said to me, "if you wind-up staying here longer we'll see what we can do for you tomorrow." I about died! WHAT?, I have to wait til tomorrow to see if I can sleep? I'm nursing this baby every 2 hours, so it's not like I can go home. Plus I didn't have a change of clothes, so I wore (AND SLEPT) in the same outfit the whole week! yuck! Luckily the next day I get the best nurse who brought in a chair that pulls out into a bed. I guess it was against the rules, but she didn't care and told me she was in charge, so no one could get mad at her.

Mitchell had 2 EEG's and they both came back normal. So epilepsy has been ruled out. They also had a pediatric GI doctor examine him. The doctors seem to think this is all caused by a severe case of reflux that has gone untreated. They started Mitchell on a very aggressive dose of meds with strict precautions to always have him upright. I was actually sad I didn't have a camera to show you the arrangements they had for Mitchell. He sleeps in a sling, that has him at about a 55 degree incline. So it almost looks like he's standing when he's asleep. I was also told he needed an excellent burping regimen. They ordered me "a wedge" for Mitchell to sleep on that should arrive by Wednesday. So 4 LONG days later I got to come home Friday night at 7:30 p.m.

I have a really nice sister and friends who took care of Reesa and Jansen while we were there, and even brought meals over for Jake and the kiddies. Kids under 5 aren't allowed to visit the PICU, so I just didn't get to see them. I missed them so much.

So we're home now and Mitchell is doing much better. He still cries LOTs, but overall is a different baby. After all, it took several months for this esophagitis to develop, it's going to take a few weeks to heal. He can focus his eyes, and has even tract a few times with his eyes. We no longer feel he is blind. He must have been in so much pain, he just needed to escape and the last thing on his list was to try and focus on anything. I've heard him coo and we've seen him smile maybe 3 times now... slowly but surely, he's coming along.

Tomorrow he has his appointment with the developmental doctor in Charlottesville. I'm hoping we can make a fun day out of it and maybe go to the apple orchards there too!

9 comments:

  1. Oh goodness, it's one thing after another...poor little guy! I hope you're all holding up, what a strain on the whole family! You're all still in our prayers!

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  2. You're amazing for always keeping such a positive attitude through all this. I doubt I would be looking for other activities to throw in if I were you (which is why Heavenly Father has chosen to make me not you! He knows what we can handle!). Oh, and don't feel silly about asking about the immunizations. I would have done the same thing!

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  3. How stressful!! I hope this will help make him more comfortable and lead to even more smiles.

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  4. Kellie, I'm so sorry I can't help more. Just know that we will continue to pray for you guys and especially for little Mitchell! We love you guys! I always feel like I can't take things day by day but more like minute by minute!! Don't stress yourself out, we can only do and feel so much at one time. You are SO strong. I realize every day we REALLY are given ONLY what we can handle! I love you!

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  5. I am so sorry Kellie! I've been wanting to visit, but Belle's been sick so then I got it-and I don't want to infect u...but as soon as we're better we'll come and help...I promise....U have been through the wringer, I just hope its about over...and look at u with that positive attitude still...yes, ur still my hero-call if u need to chat or need anything!

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  6. AHHHH! Way to hang in there. Hopefully it was a cute/comfy outfit that you got to wear for a week straight! :) So glad it is reflux and not epilepsy...but totally scary!

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  7. Kellie, I'm so sorry! How scary! Hopefully, all the doctor's orders work for this little guy! Nicholas was a very fussy baby for about the first six months of his life. I tried it all too. I switched formulas 3 or four times, tried reflux medicine, got his ears checked every other week, he wasn't happy unless he was being bounced and walked around. He is still a high maintenance kid. I've come to accept that it's just his personality, but it is SO exhausting! You have been through so much. You are such a wonderful mother and you are doing such a great job taking care of everyone! You are going to get through this. Just take one day at a time. There is nothing else more important you could be doing right now. It won't be like this forever. Sure love you!

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  8. Could his seizures be related to his medication? Has his sphincter matured enough to keep his stomach contents from injuring his esophagus? Does his pain coincide with sharp bending of his body (while playing) which would force the acidic stomach contents into his esophagus?

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  9. Oh Kellie, how scary! I can't believe everything you've had to go through so far. You put everything into great perspective. I'm so glad he's happier now at least, and hope you can get some sleep sometime soon!

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