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

In My Arms

Today I was able to hold Hunter for about 20 minutes. The first time my little man was in my arms since Jan 5th. I held him and I cried, I know imagine that. I miss being able to snuggle so bad. Hunter just melted in my arms. He gazed in to my eyes like, what took you so long mom.

Otherwise today was overall uneventful. Hunter had a CT scan today of his head, chest and pelvis. No official report. It does appear the head CT is fine. They wanted to validate that through everything he did not have a stroke, and there is nothing that shows that. They were also checking to validate they did not see anything that could resemble fungus. Fun Fun.

We continue to pray for pee. We have a long road ahead still, but are still heading in the right direction slow but steady.

Thank you for keeping Hunter in your thoughts and prayers. God Bless

Little Step Back

Mr. Hunter took a little step back today. They took him off the vent yesterday, and last night we started to suction blood, and he had blood coming out his mouth. The did a bronch this morning to check to see what is going on. It does not appear to be "Trach" related. Looks like the blood is coming from his lungs. The Dr. put Hunter back on the vent just for CPAP support. That was this morning, and he seems better already. The Dr. said he just needs more time, but still wants to investigate in to the potential that there is another infection. Stop the madness!!! I just want my little guy to feel better. I just want to hold him. I just want uneventful back. Seriously, is that asking a lot?

Then I take a deep breathe and remind myself how far we have came over the course of the last 11 days. Crazy to think we have been here since the 5th. We continue to pray that Hunter continues down the road to recovery, even if that road is a little longer than we anticipated. Please continue to pray for our sweet boy.

God Bless

One Foot In Front Of the Other

Well, we continue to put one foot in front of the other. Hunter continues to go in the right direction. We are off our cardiac meds, and our pain drips. We are still on three different antibiotics, the anti fungal will be for another 5 weeks. Hunter remains on the vent, but they only have him on pressure support, often known as CPAP. The hope is to have him off by the end of day. Hunter also remains on dialysis, but they are allowing him to go fluid positive. They want to see how his lungs react to the fluid and see if we can get his kidneys to kick in. We are making urine, so that is a positive note.

Today's was the first time we were able to get our hair washed and a half way decent bath, and he just melted.

We continue to thank God for our miracle little man. We are so so proud of him. We have a long road ahead of us, but it is a road we will walk together. Thank you again for all your prayers and support. God Bless

I See Eyes

One of the moments I have been waiting for... Hunter opened his eyes last night. I was so happy to see those big blues I started to cry. I know, imagine that. Hunter stayed a wake for a little, but you could tell he has wondering what was going on. I am so so proud of him.

The plan today is to take him off his drips for sedation and pain and change to meds every 4 or 6 hours as needed. They will continue to come down on the vent settings as he becomes more and more alert. We continue to pray for clear blood cultures and urine cultures. We continue to pray that his organs recover from the trauma they have encountered.

Thanks again for all your prayers and support. God Bless

Step by Step

I keep reminding myself that we need to keep taking baby steps. As our path continues, those steps will get bigger. It gets to be long and emotionally draining days waiting. Waiting for Hunter to wake up. Waiting for Hunter's infection to go away, since he is again testing positive for a fungal infection. Waiting to be able to hold Hunter in my arms.

I keep reminding myself that good things come to those who wait, but waiting is hard. Overall Hunter is making progress in the right direction and that is what matter. What is that mean? Well, wait and see, the motto of my life for the last almost 8 years. You would think I would have this mastered by now.

The Dr's decreased Hunter's sedation meds, and decreased the settings on the vent. We have started to see a periodic eye open or lip move. So, we continue to wait.

Continue to keep Hunter in your thoughts and prayers. Pray that the fungal infection goes away for good. Pray that his heart and kidney's recover from the trauma he has experienced, and that his liver is not damaged by the increased amount of fungal medicine needed.

Thanks again. God Bless

Roller Coaster

Wonder how I am feeling these days? Well, you know that feeling in your chest when you are at the top of the roller coaster looking down? Your heart in your throat? That is how I feel these days. Even though Hunter is doing great, all things considered, I still feel like I am sitting on the edge of my seat. I guess having seen first hand how fast things can turn has made me feel like this. I know God is watching over Hunter and guiding him, now we just need to patiently wait. Those of you who know me know what a good waiter I am. I know good things come to those who wait, I just have to keep reminding myself of that.

I don't know what the next days or weeks look like for us. But, do I really need to know? What I know right now is that my little man is here with me. He has proven that he is a fighter and he has too much unfinished business here. Now I need to remind myself the importance of waiting patiently. I need to remind myself that I need to wait patiently to see what the next few days and weeks will look like for us. Will it be different? ... Probably. Will it be bad? Not a chance.

Thank so much for all the love and support. Continue to pray for my sweet boy Hunter and the true Miracle that he is.

God Bless

Still Swimming

We are still swimming in some heavy waters. Things are moving slow, but in the right direction. Hunter's blood cultures came back normal which is a huge huge step. He is still vented, on dialysis, and heavily medicated which includes being paralyzed. He is truly our miracle. I am so proud of him. He has shown us that he is not ready to leave his family here on earth yet.

The road in front of us is still pretty long. We are just taking baby steps, but I think we hopefully reaching the tip of the woods. There are a lot of unknowns yet at this time including the damage to his heart and kidneys.

We just continue to pray each and every minute for the blessing we have been given. Thank you to all our families and friends for their love and support during this difficult time. It means a lot.

God Bless

Rough Road

Well, Day one here was very interesting, Many students and doctors hard to keep them all straight. As the road for Hunter gets more complicated, he still reminds us his fight to live is strong and that he is boss. throughout our stay Hunter has had his ups and downs but the more information we get such as finding out it is a systemic infection with fungal and bacterial components, the closer we are to getting better. As the days go by we gain more time to treat, currently Hunter is on dialysis to help him get rid of the fluid he is retaining and receiving many antibiotics. We are all praying that he does well and gets better. Please keep us in your thoughts and prayers.
God bless,
Love the Woldts

Another Trip

Well, we have taken another trip. Hunter was admitted to Children's in Milwaukee today. He is retaining fluids and having some respiratory issues because of it. The GI doctor believes he has more than just GI issues going on right now. What that more is... we don't know. He is consulting with some other docs, including cardiology. The GI Dr is concerned that his temp and heart rate are very low. As we find out more I will keep you posted. At this time, Surgery is on hold for Friday until we find out what is going on. Please keep Hunter in your thoughts and Prayers.

God Bless

Holiday's

Well, we have made it through the holidays. Sad to say, but I am glad they are over.

Hunter is doing pretty good. He has been having some issues with his blood sugars dropping low. We have been monitoring them and were finally able to talk with GI in Milwaukee. The answer was if we thought they were bad enough we should come down and be admitted so that they could work on tweeking his TPN. We made the decision to just keep monitoring things and talk with his GI doctor in Milwaukee on Monday when he gets back in the office. So, we will see what he has to say. I am really hoping we don't have to head to Milwaukee any sooner than Thursday. He has been sleeping more than normal, but is starting to have a few more awake times. Maybe he is just trying to prepare himself for his surgery.

So, the plan is still to go to Milwaukee Thursday morning, and Surgery will take place at 9:30 on Friday. I am starting to feel a little better about the surgery and am starting to feel comfortable with the decision we made. Hunter has been having stooling issues still on the TPN, and then he starts to throwing up. I think he is just trying to remind me why we are doing the surgery.

So, we are just trying to hang tight and coast our way to Thursday.

Hayden and Harrison are doing well. They enjoyed Christmas. I think the hits were the tinker toys and the Geotrax trains.

Otherwise, same old same old at the Woldt house. I hope everyone had a great and safe holiday.

Thanks again for checking in. God Bless