Big Bump In The Road

Yesterday we had a big bump in the road. The did a bronch on Hunter since his lungs do not appear to be getting better have his pulmonary hemorrhage. They sedated him, and he did not care for the sedation, and decided to drop his blood pressures. After some additional meds, things finally settled down a little. We ended up putting Hunter back on one of the cardiac meds to get his blood pressures back up, so that we could remove some of the additional fluids we had on board. The bronch came back with a gram negative result, which means he has something brewing. We have added some antibiotics to hopefully start turning the little man back in the right direction. This puts everything else on hold, since lungs take precedence over kidneys right at this time.

So, as we knew, one step forward and a few steps back, but we are bound to get back in the right direction. Please pray for Hunter's infection to go away. Continue to pray for healthy lungs, lots of pee, and for our heart to remain strong.

We continue to trust in God and Hunter's strength and determination. We are so proud of him fighting so hard. This big bump in the road will soon be behind us, and we will head back down the road to recovery. We still don't know what that road ahead of us looks like, but we believe God will continue to guide us and give us strength. Hunter is in charge, and God is guiding him.

Thank you for all your love, support and prayers over this last 24 day journey.

God Bless

Waiting Game

Yep, another day, and we are still here. That will be the tune for a while. Hunter's X-ray looks pretty much the same from yesterday. So, not really any better but not any worse, so that's a positive to me. The Pulmonologist stopped by this morning and they are trying to decide if they want to bronch him and take a sample to culture just to make sure they aren't missing anything. Like I told them, if it takes a few days for a "normal" child, it could take a good week for Mr. Hunter. So, in the big picture I am just trying to remain patient.

On another note they cathed Hunter this morning and were able to get 120cc's of urine. That is awesome since they are trying to keep him pretty fluid even! What a rock star!

Otherwise, we are just playing the waiting game right now. We continue to pray for Hunter's lungs to heal so we can begin letting him be fluid positive which will allow us to challenge his kidney's more. So, please continue to pray for our Sweet Hunter.

Thanks again for all the thoughts and prayers, God Bless

Happy Tuesday

Well, it is a happy Tuesday! Hunter' X-ray looks better this morning, he is starting to hold his own temperature better, and his platelet count was up from last night without having to get platelets. All good news. Although this morning they thought his heart went in to a "flutter" type rhythm, until they were reminded that the CVVH, dialysis, interferes with their monitors. Talk about trying to put mom in to cardiac arrest.

So, overall they feel Hunter is going back in the right direction. He is making urine, despite the fact that they are keeping him pretty much fluid neutral. Tomorrow, they feel his lungs will be even better and they may decide to let him go more fluid positive then. His urine culture remains negative, along with the sputum culture they did two days ago. We are on day 21 of 42 of being on our micofugal antibiotic, so we are officially half way there.

We pray each day that Hunter continues down the right path. We are so blessed. Thank you again for all your love and support. God Bless

Craziness

I know everyone always says two steps forward and one back, but I was really hoping they were kidding. Hunter had a pulmonary hemorrhage on Saturday evening. With the bleeding issues he is still having, the Dr.'s are not too surprised. So, we are back on the vent. We have stopped the slow feeds we were doing, and now need to wait for our lungs to heal. I keep telling myself breathe in breathe out. Last night was an OK night for Mr. Hunter. His respiration's were up and he was easily aggravated, so we had to give him some drugs to relax. Right now he is sleeping comfortably. I am eagerly awaiting rounds to see what the Dr's have to say.

Hayden and Harrison were happy to see mom this weekend. We had a nice weekend. They have really adjusted well which made it much easier for me to leave yesterday.

Please continue to keep sweet Hunter in your thoughts and prayers. God Bless

Quietness

Well, things are rather quite here, considering the circumstances. Hunter is out like a light sleeping right now and I am happy to see that.

Not too many changes this morning. Our bowels are working well right this moment. Hunter had another large blow out this morning, I am sure his tummy feels a ton better. He have 54cc's of urine in his bladder this morning when they did the bladder scan, so we need to continue praying for pee.

GI stopped by yesterday and wants to do some additional motility studies before we make the final decision of what to do for the GI issues Hunter has been having. This morning we started pedialyte at 5 cc's an hour just to see how his tummy reacts. We will slowly increase that and see what happens. Based on our findings we will decide what the appropriate studies are that need to be done and the next steps from there.

Respiratory wise Hunter is staying on CPAP for the time being. Since we are starting to keep Hunter fluid positive, they want to keep him on the CPAP to make sure his lungs tolerate it.

Overall, we have nothing to complain about here. Everyone has been so wonderful. Hunter is such a rock star. I can't express how proud of him we are.

Thank you again for keeping Hunter in your thoughts and prayers. Please continue to pray for pee : )

It's A Great Day

I have always known it is the little things in life that matter. Hunter really taught me that when he was born. Today, he continues to remind me of this fact. Overnight they cathed Hunter had he had 70 cc's of urine. This is huge!!! Then this morning, during bath, we had a little bit of stool. Hunter continues to amaze me. I could not be more proud of him. These are two big steps in the right direction. I am trying to not get too overly excited, but that is hard. He is an amazing guy. Continue to pray for sweet Hunter.

Today's Hayden's big day. Hayden is officially 6 years old. WOW!! I just can't believe it. I called him this morning to wish him a happy birthday and he was so excited. I am so proud of you Hayden!! You are the most loving and caring 6 year old I know.

Harrison is doing good. Right now we are trying to get through the hitting stage, love that. I am so excited to go home to him and Hayden tomorrow night. I am so excited to sleep in my own bed tomorrow night. Dad and Hunter are going to have some special bonding time, that will be good for them both.

Thank you again for all your support, thoughts and prayers during this difficult time. God Bless

Long Road Ahead

Well, things are going steady here on our end of the world. Hunter's CT scan came back clear for what they refer to as "puss balls." So, that is good news. We are still on CPAP while our lungs continue to heal. The Dr's don't want to challenge Hunter's Kidney's too much until his lungs have cleared, which makes sense. On another note, we did get the word that they are thinking another month. Yes, that is what I said, another month. I am trying to focus on each day, but when they say that how can one's heart not sync. But, if that is what we have to do to get the Huntman back in tip top shape, that is what we have to do.

I am thinking of going home on Friday evening. Neil is coming down with Hayden and I thought he could visit for a little and then Hayden and I could head home. So, this way Neil and Hunter could have some special male bonding time and mom could go spend some much needed time with her other two boys. It will be hard, but Hunter is in good hands.

So, we continue to walk slowly down that long road ahead of us. But, we have to be happy that there is light at the end of that long road. Hunter is stable and a total rock star. I am so so proud of him. He is a lover and a fighter. I tell him everyday, he's stuck with me : )

Thank you again for keeping Hunter in your thoughts and prayers. Please continue to pray for recovery... and a lot of pee : ) (I know it sounds pretty silly)

God Bless