Wednesday, August 23, 2006

EXHAUSTED

Max and I are exhausted. Neither of us slept much last night and then we had a very long morning at the doctor's office. In addition to some respiratory issues, he was having a very difficult time with his feeds last night. He vomited everything and then was dry heaving this morning...I think I changed my shirt about five times last night.

He was absolutely miserable...poor lil' guy. And every time I thought he was done vomiting and back to sleep in my arms, I would gently try and put him back in his crib. Usually he does that just fine...but each and every time he just cried and cried immediately. "Mommy love" seemed to be the only thing that worked, even slightly, to bring him comfort.

I'm so confused on what is going on with him. He has all these random symptoms and nothing is adding up to a "diagnosis." His latest was a rash all over his chest and then on his face this morning.

We did a chest xray this morning and more blood work. Neither went smoothly to say the least. I'll have to bring my camera someday to the office so you can see what Max endures each time for his xray. This seat is quite frankly a torture device. He just cries and cries and looks at me, like "why in the world are you doing this to me!?!?"

Then they could not get a good vein so we resorted to the toe poke. But for whatever reason, his blood was not wanting to move today and then it also started to clot. So I think we ended up doing it 3 or 4 times...he again was crying frantically. Actually the phlebotomist was so upset too that she had someone take over for her. Hey, can someone take over for me too??? And while you're at it, have someone take over for Max too please...thanks.

After all the tests, inhalers, exams, consults, etc., they brought out their high tech suction machine to see if that would help his tachycardia (breathing rate). The doctor had such a difficult time and said obviously you are not going to be able to suction Max for much longer as he is getting stronger (Max was completely flipping out and it took all three of us to hold him down).

Are you kidding? It's a lifesaver when he cannot breathe. I do this several times a day, even in the middle of the night half asleep! I showed them my technique and they were pretty amazed with how well it works. I sit opposite of Maxwell with one leg over each arm holding his head still between my legs. It looks awful but it keeps Max from going crazy! I've even learned a way to keep him from being furious (some of the time)...I tickle the corners of his mouth with the hose. Sometimes I even get a smile, which is just crazy. That's only if he is in a really good mood and I'm just going in for a quick suck. (Ok, is that weird that I have names for the different types of suctioning that I do???)

I was pretty emotional during the appointment today. I kept trying to hold back the tears, but a few escaped. Max has had such a difficult few months. None of it has been life threatening or anything (thank you Lord!)...so in some ways, I feel like I shouldn't complain. (Actually I guess some of it is life threatening but we always catch it in time, but I don't like to think of it that way.) He is alive, out of the hospital and making great developmental progress. I feel quite blessed considering all that could be happening to him right now.

But at the same time, I am discouraged because he has had one virus after another, after another, after another. There never seems to be more than a two day break. And his illnesses hit hard and you never know how serious each one will be. So it adds a layer of tension and worry...and I feel like this is all on my shoulders. Actually it's not just a feeling, it's the truth unfortunately. Yes we have a great medical team for Maxwell...but as the only involved parent, the daily decisions and responsibility are solely mine. It would be so helpful to have someone to talk with about everything. "What do you think about this? Have you noticed this? Do you think we should..." Oh well, it is what it is...but it just can be a little overwhelming from time to time.

Anyway, the doctor was feeling really bad for Max too and tried just about everything to come up with a solution. When nothing really showed up, he was pretty stumped and frustrated.

Isn't there some kind of miracle pill to make this pain all go away??? I just want Max to feel good. I want him to be able to breathe normally and not like he just ran a marathon 24/7. I want him to be able to focus his energy on development, not breathing. The doctor reminded me again that *hopefully* time will be our cure. His lungs need to grow and recover from his chronic lung disease. And then *hopefully* he will be stronger and more resistent to germs and infections.

I best run...Max is starting to wake up from his nap. Hopefully he will be feeling rested and a little better. The doctor wants to see him again tomorrow. Hopefully that appointment won't be as intense as today's. (I just noticed that is about the tenth time I used *hopefully* in this post...seems to be one of my favorite words recently...always hoping, hoping, hoping.)

11 comments:

Jamie said...

Hello Amy,
I'm sorry Max is having a hard time. I can tell you from experience that Jonas went through the same thing. For his breathing, he ended up getting a trach, because the issues were never ending. He also ended up getting a nissen fundoplication, due to reflux and vomiting, which also helped breathing issues. Have they checked Max's T-cell count. They have found out with Charge kids, that some have immune problems also. So we found out that Jonas's T-cell count was very low, so we would give him infusions at home. Since Max's is getting sick a lot, maybe they should run test on his immune system! Of course I'm not a doctor or anything, but it seems like Jonas and Max have a lot of the same issues going on! I hope things get better. Call or write back if you need anything.

Jamie Chamberlain :-)

Stephanie said...

Oh Amy, I am so sorry for you and maxwell. It is just not fair that you and him have to go through so much. I will keep you in my prayers and send you some good vibes.

Stephanie

Sara B said...

hey lady-
so sorry to hear that things have been rought....at least rougher than normal. I'm thinking about you and praying that mr. max is feeling better soon.
love you guys!
Sara

Dylan (and Kristy) said...

Hi Amy and Max,

Hmm. I want to say I'm sorry that you are going through this...again, but it just doesn't seem like enough sometimes. A miracle pill to help Max feel better and to not have to endure all this would be great.

As always, I'll be praying. Tonight I'll pray that maybe tomorrow they will find at least one solution or have at least one answer for you.

Let me know if you need anything. I can always make that ever popular Starbucks run or perhaps deliver you a much deserved dinner with a fantastic dessert.

Love ya.

Kristy (and Ray, Dylan, and Jonah)

elle said...

hoping right there with u amy LOL think all kiddos hate suction mum says i used to hate it but she tells stories that i used to fall asleep in pt LOL and as for suction you shouls se me when i get my teeth cleaned u no that hose i think its a suction but i donno they have the autrosound cleaner and this thing to take otu the plauge and waer the sucker thing well id have my toungue in it soemtimes and i used to put the toungue all over it but last time i mannage to have it perfectly postioned just under it lol and it took half an hour to clean my teeth whe it usualy takes an hour so max ru nto the only one here m dental lady has had many battles with me and shes known me ten years and im 21 LOL

ang said...

amy and maxwell,
saying extra prayers as my head hits the pillows this morning. I love you and will be thinking of you. The light is shining brighter for you and your answers will be coming. Continue to have faith and hope. You are amazing absolutely amazing.

Ruthie said...

I wish I could fix it and make it all better for you and Max. Please remember that even though we are not right there beside you physically, there are always people backing you up and giving you support. You are doing an amazing job- remember that.
Take care- & give Max a hug from me

Steph said...

We're all hoping with you, Amy.

Hopefully today's appointment is going better...and those pesky bugs will leave Max alone for more than a couple of day!

Lots of love to you and Maxwell,
Steph

MarkCoyle said...

WOW Amy, you really have to endure alot. I feel for you. I know you do it with love, but man, if anyone deserves a cruise, its YOU!!!!

Lisa W. said...

Amy, I remember those awful days so well. I am glad they're over. It doesn't make it any easier when people say this, but I KNOW it's true - things WILL get better and easier for Max. I used to think it never would for Kennedy. Now, we haven't seen a doctor in a year (she's healthier than most kids in her class at public school). We just uploaded some videos of her at our new web site http://www.chargesyndrome.info . Also on the surgeries page (off of the "Kennedy" page), you will see all the blechy hospital pictures so you know she was once in Max's shoes - then you can see all the other great pictures of her dancing, riding a pony, etc...

Hope he feels better soon...

camport said...

What you are doing is not all in vain. Just remember that in everything you do...the moments when you feel most alone and having to make all the decisions...it's for an awesome purpose. You inspire me, make me want to be a better mommy when my kids are making me absolutely nuts. Max {and you} is in my thoughts and prayers.