Feeling Overwhelmed...discouraged (update added)

I really wanted to shout out yesterday that we had answers to all our prayers...would you believe NOTHING happened yesterday? By evening I was fried.

I will try and briefly update what is going on...

I got a clearer picture from Dr. carter when he talked to me around 7 p.m.
He thought ENT had been in yesterday. I explained to him that 2 residents came by the day before, dumb and dumber, oooops, I didn't say that...I mean the 2 ENT docs looked at him and were completely baffled  by Hudson, in my opinion. Dr. C sorta agreed with me re. the 2 and said they reported that his tonsils appeared large but did not think that the adenoids was an area of concern. Dr. Carter told me this is conflicting because the tonsil tissue is the same as the adenoid tissue, so typically if the tonsils are large, the adenoids will be large as well. His idea is to keep Hudson on the Augmentin for 6 weeks 2x per day then take him down to once per day. If his adenoids need to be removed, this wouldn't happen until the infection and illness is all cleared up. He gave me a  better understanding what all of this looks like, as I was thinking it would be done while we were here.

He said that Dr. Manning would come and visit us today. He is "the" doc in ENT...and guess what....he came...along with the other 2 ding-dongs (sorry, just a bit frustrated)

So they woke me up at 7 a.m. to talk giving me 2 options...a nasal anibiotic that would be done on an ongoing basis and does not get absorbed by the body, or botox injections in the salivary glands. I explained at baseline Hudson is not a big drooler and my idea of a drooler is a kid that needs a bib because they saturate their clothes...that is not Hudson. I asked about the scope of the adenoids as Dr. C think there is a strong possiblity. Dr, manning thought it had ben done!?! No...I have been waiting for 2 days!!!! So he said we can do a scope or xray and he prefers the scope as they do it bed-side...great lets do this....then he says ok...maybe tonight or tomorrow!!!! I told him I won't be here....my plan is to get out of here today....so he says if I am getting discharged have ENT paged and they will do it before we leave. They walk out.
Seroius lack of communication here...so irritating!

So, i shower and in my head think I am going to prepare my day today to get the hell out of here...get all cleaned up and leave Hudson's room to get coffee and I see the doc that comes in every morning to go over his care. I asked if he was planning to come visit cuz I was headed for coffee and he said he was in and checked H out already. Hudson had blood drawn this morning and the gal, another ding-dong, had to poke him twice because she didn't draw enough and then it came back that it needed to be done again cuz it clotted, etc. He said the amonia levels are high and the p-lactyate levels are high which are metabolic/mito issues so Hudson had to be put back on iv fluids. He was taken off yesterday. I started feeling like my gung-ho attitude to get out of here started fading. He said he will need to talk to nuerology to find out where his levels need to be before Hudson can go home but he thought we were looking at Sat or Sunday!

When I called Paul and told him...the floodgates opened....he came home yesterday and I haven't even seen him and he leaves Sunday. Hailey's bday is Sat and party is suppose to be tomorrow and I haven't cancelled cuz I have no Ph#'s. I feel like I am going to dissapoint a very special little girl, who deserves the best birthday ever! I want to see my husband....I am tired of doing this alone. I want to be home, all of us together and this whole scenario just sucks!!!! I cried and Paul was so positive and said if we are not home by sat he will take her to breakfast and then come down and we will all be together in the hospital and maybe take her for dinner dwntwn Seattle. He made me feel better...a little anyways.

For now...I requested Hector to do the blood draw and was told he will be in at 11. Hector is amazing, quick and efficient...no double pokes with him!
 I am praying the scope gets done TODAY and we get answers...YES he has enlargened adenoids...I need a AAAAHHH moment...where it all makes sense for doctors and me.

Positivity is leaving me...is it ok to sit and cry, or will they admit ME when they see me breaking down?? I am just hitting my max!

On another note...

I had a nice surprise visit from Dr. Saneto yesterday and Pam the day before.
Pam sat and talked with me at least 30-40 min. She is a Christian, so we sorta got off the medical talk and talked personal. I had never told her or Dr. S about Paul getting a promo and relocating to Vegas. We talked about the whole scenario and she never once made mention of being able to care for Hudson in neveda or making it work...she said what I know to be true....He HAS to be here, you are doing the right thing. She just felt sorry for how much i have on my plate. It is nice because I can talk about my faith, how I prayed through the issues and decisions and how God made things crystal clear in many ways how we need to handle this season of our lives. She was in aggreance 100%

Dr S came down and we talked seaizures and then we too got on a personal level when he mentioned that he heard Paul was  working in Vegas. So I brieflly explained how we came to our decision and how God led me there. He listened and not once disagreed that Hudson needs to be cared for by him. He is so incredibly humble. I told him I don't mean to put him on a pedestal, but when I read that he is one of 50 in the country researching mito and then the ONLY one  researching mito and the relation to epilepsy...I said it was like reading Hudson's name across the screen...that is Hudson...you are studying and researching exactly what Hudson suffers from...How can I remove him from such care??? He just nodded his head in agreeance.
So now they know...and I am glad...because I am sacraficing alot to make sure Hudson has the very best care, but there is nothing more precious than Hudson and my other 2 babes and I know God is walking me though this...even at the loneliest  of times.

Please pray for things to back on the upward swing...a scope to be done TODAY...results that we are looking for...for me to get some family time with my kids and husband...the timing on all of this completely blows! Pray for my sweet Hailey....that in spite of this unexpected hospital stint...she will feel loved and special no matter when or how we celebrate her.

Thanks for your time and prayers...it means the world in this lonely little hole I am in...hospital are so depressing!

*just got back to the room...am told by the nurse Hudson tested positive for Rhino-Virus...which came back through the nasal swab when we were in the ER...now we are in isolation again!*
***********

UPDATE....
The scope has been done now. The adenoids appear normal size. He said the nasal cavity is infected so they will be adding on a nasal spray antibiotic given several times a day for 3 weeks. He said this may have been festering a long time and the combo of the 2 antibiotics will hopefully knock this out once and for all.

Hector came in afterwards and redid the blood draw. The gal hardened his vein so Hector even had a hard time getting the blood to draw. Between the 2 events, and all the kicking and screaming, Hudson is out cold...poor kid. After I was giving pressure to the draw site Hector grabbed his arm to bandage it and Hudson started screaming all over again...he thought he was getting another draw...he is so traumtized!
Now we wait for blood results. Best case we go home tomorrow. Oh and now I am told his site for his iv looks puffy and swollen! Poor,poor baby!

Feeling F'd...

That would be FRUSTRATED!!!

Why?

A wasted day.
One doc came in all day...Dr.Carter,to just see how Huds was doing and to let me know he should be seen today re. the adenoids...no one came until 6 p.m. today!
My guess...this doc had a full clinic day, came down to us at the end of his day,knew nothing of Hudsons history,didn't look at his chest x-ray, really...just seemed clueless!

He didn't even seem to be gung-ho to do the scope for his adenoids, or make it seem that it may be a strong possibility. Just fries me when doctors act clueless...FLIPPN FRUSTRATING!!!
Then 10 min later he brings in another clueless colleague...and it ends with possibly doing a x-ray of his profile and look at his adenoids that way, or possibly injecting botox in the mouth to numb an area where it would lessen secretions...at this point I was feeling too irritated to even get what he was saying...cuz botox and secretions didn't sit well with me.

When these docs are talking to him like he understands what they are saying...like..."O.k. Hudson, open your mouth for me." "Stick your tongue out Hudson"...

Really? Makes me think they have no idea who Hudson is...I wonder if they even skimmed his records...because doesn't know language...I wish, but come on...this seizure saturated,energy depleted baby boy barely smiles, and they think he understands their simple requests...puhleez...they could not convince me they read his chart before entering our room...FRUSTRATING!

At this point...I need all of you who believe in the power of prayer to pray that whatever they need to see to indicate adenoids...they see...because, you are so right Heidi...that would be simple and a clear answer and nothing is ever simple with MITO...and I crave SIMPLE!!!

So please...Lord...hear our prayers... For our dear sweet angel boy to have a simple, clear answer, such as the adenoids...I fear the antibiotics that were started today will once again bandage the source of the problem, and for Hudsons sake we need the source revealed.

I so appreciate your faithful prayers and love. Wednesday will bring answers and leave the frustration in the past...look for our answered prayers in my next post.

update

Long day...but happy I won't have another night like last night. Too scary being alone in this situation.

Things I have learned today...

*normal bloodwk
*NO RSV
*Chest Xray was taken showing similiar enlarge lymph tissue around heart. Dr. Carter (pulmonary)said not AS enlarged.
*Dr. Carter is requesting Eyes,Nose,Throat team
*Lungs clear

Tomorrow;

So far I know that Dr. Carter feels the ENT team should do a scope to look at his adnoids. It is his thought he could have enlargened/infected adnoids which could be the cause of our problem. It also causes snoring which Hudson does. He wants them to asess tomorrow.

They will likely put him back on augmentin tomorrow too.

I feel like I am on the verge of getting sick. Praying it is only symptoms of exhaustion and not illness. I have that funny feeling in my throat.

Will update tomorrow...thanks for all your support as it keeps me going as I trek through these long difficult days.

heading to the E.R.

Please say prayers for Hudson...

Last night was what I feared would happen.
Had I not stayed up all night with him....suctioning him, and caring for him he would have possibly suffocated on the mucous he was coughing up.
We spent the night coughing, suctionong, seizing....until 4:30 a.m. He was wheezing, like in Dec., and I gave him albuterol. I just think I was prepared to get him through the night and knew I had no choice but  to stay up and make sure he was o.k.
I am sleepless and withered....but know I can't allow him to go on like this, or have another night like last night.
At one point I had wrapped my arms around him as he tried to sleep and all of the sudden his body started shaking as if he had the shivers. I turned my light on and held him and cried....I feared I may loose him....his breathing was off...the whole things was so scary....being all alone, dealing with this....made it so much more frightening.

I called Pam....she agreed....he needs to get to the E.R.

She said he will likely be admitted and will need I.V. fluids and we HAVE to get to the bottom of this never-ending cough/mucous.

I am praying all is revealed to these Doc's for them to figure out and get to the bottom of this.
I really don't know how Hudson can survive all of this....he amazes me!

Prayers needed for my other 2 H's....it is Hailey's bday week...I don't and can't think about that right now...but I know she will be very sad if we are not here....

Please keep us in prayer.....will post when I know where the day will lead us.