Thursday, August 20, 2009

someone fix the roller coaster

We are still on the never ending roller coaster that starts creeping up the hill, goes back down, levels out, and then sharply turns again. I try to joke with my friends, laugh, and giggle, but honestly the stress is killing me on the inside. Mike is at the end of his rope with everything, and I see him truly struggling. He doesn't sleep well, doesn't eat well, and screams more than anything. It's also affecting Emily, and I know it. I am trying to balance it all out, but honestly unless you are in my shoes you just have no clue how hard this is. One minute Jude eats, and the next he doesn't. One minute we are fine, the next we aren't. It's a never ending maddening situation.

Yesterday Jude ate pretty well taking in 19 ounces, and probably half of that was pediasure. He also took some solids, so I think that is pretty good. I noticed he still sounded pretty rattled which makes me wonder if that the pneumonia going away or aspiration. We have to schedule the appointment with the GI to find out for sure. Last night we were ecstatic and mentioning how Jude had not experienced any spasms since starting the Depakote sprinkles. Then BOOM he had a very long drawn out full on seizure last night. I have not experienced one of those in awhile, and the heartbreaking part of it was Jude knew what was going on. His body would relax in between the clusters, and when one would strike he would whimper quivering his lip. I cried for him because it was so sad. Luckily Emily was at my cousins so she was able to escape that situation. Today Jude was again refusing to eat, but Mike tried the sippy cup and he gobbled down the formula/pediasure. It seems if he refuses the bottle we try the sippy, and vice versa until he picks one to eat from.

So I mentioned we are stressed. These are not items everyone chooses to talk about on their blog, but I have promised to be 100% honest. I want to share everything I can through this journey so people reading it in the same situation are not alone. The other day I had a woman email me telling me "thank you so much for admitting how angry you are because I am too". I am angry! I am a plethora of emotions from feeling blessed, to stressed, to happy, to sad, to angry, and more. It's okay to have these feelings, because no one expects to be thrust into this type of situation. I talked with Mike in length today about if it would be better if he worked, and we changed roles. I love my job, and have a great boss, but my family does come first. Mike let out a lot of emotion explaining if anything happened to Jude, and he had not been with him everyday he would lose it. I feel the same way, but I remind myself constantly Mike has lost 5 children. Doesn't seem fair does it?

I simply remind Mike that our little Jude is a fighter, and that he will be fine. There are many of our friends in the same spot whose children are thriving, and I point out their ages. Mike says he feels he is in the trenches of battle, and I know that has to be tiring. So I have come to the conclusion that all we can do is march on with our daily routines. I try to make our lives as normal as possible and carry on. In my mind this is what we need to do, and I will drag Mike along with me by his collar (smiles). I remind myself that the recent stress levels probably escalate our sometimes irrational thoughts regarding Jude's situation.

One great piece of news... for a change. I came home last night, and Mike was holding Jude under his arms and had him propped on the counter. I said "Hi Jude" in my high pitched voice, and he IMMEDIATELY whipped his head around quickly looking right at me. He did that twice last night!!


Midwest Mommy said...

You are so strong. I just wish I could hug you right now. I am not going to say everything is going to be ok because I don't know. I am just going to pray everything starts being ok for that cutie pie! Hugs.

Purple Quilter Queen said...

You are doing the best that you know how. Jude is so lucky to have a mom and dad like you and Mike fighting to do everything that is best for him. I'm sure there are some parents out there in the same situation that don't have the energy, passion or wherewithall to even begin to know what to do to get the help that their child needs. I admire you both for all you have done to enable Jude to have the good life he has. He is very lucky to have such caring parents and such an awesome big sister. You have shown me that when life gives you lemons, you know exactly how to make the lemonade! Keep the faith. In some weird way, God is rewarding you. Jenn

Katy said...

I really have no doubt that Jude is going to exceed expectations--those seizures are just slowing him down. You are in the trenches--there's no other way to look at it.

Anonymous said...

I have been following your blog and today I felt I should post a comment. I am a mother of a 4yr old boy who had a hypoxic brain injury, has CP, had infantile spasms now tonic seizures. I know exactly how frustrated you are. When it seems like it can not get any worse it does and we think how will we get through this. You will. I remember that I worked so hard with my son to eat every day. I would spend hours and hours and all my energy for him to eat. Unfortunally my son had a swallow study and he was aspirating so we had to get a g-tube. I was devestated. I felt like I failed and I felt like it was really the only skill my son had left. But after that his health improved and i did not spend all day force feeding but rather enjoying and playing with my son. I know you do not want the tube and i really pray that this illness will pass. I do have one suggestion ,we bought a thickner and thickened his liquids. If your son eats better you might try it. You can by over the counter at a pharmacy. I will say that your life never gets stable you learn a new stable. I promise it does get easier. Warm thoughts to your family and I hope i did not upset you by talking about a g-tube.

Candace said...

HUGS to you and the whole family! You might also check into Resource Just for Kids. We get it through our med. supply co. but I have been seeing commercials for it on tv like you can find it at walmart. It's a red box of formula that is like Pediasure but has even more cals per oz. Ped. has 30 and Resource has 45. We use this for Faith to keep her weight up b/c she is so sensitive to volume. We can feed her 30oz and get 1350 cals down her compared to Ped. we had to do 45 which is ALOT! We can then substitute juice to keep her hydrated better. Just a thought.

Cjengo said...

WOW, thanks so much everyone for all the wonderful advice!