On To Week Three...

Yep, on to week three of casting. Hayden is now up to a +10 degrees on his feet from the beginning -5. AWESOME!!! So, looks like one more week of casting and then PT. So, we continue to count our blessings. We will come back next week and hopefully be at +15.

Thanks again for all your prayers and support! Just one of the many great miracles our family has been blessed with this year. Thanks again!

It's All Good

Just like the title says.... it's all good. Boo is fabulous. We saw the Orthopedic doc on Monday and he was very pleased with Boo. He has a slight curve, but nothing he is at all concerned about. Boo's hips look fabulous also! And to end the day on a good note, our Electrolytes are all good! Ya!! We were able to spend some time chatting with Nurse Jenell. She was one of Boo's primaries when he was there. It was so nice to see here. She was amazed at how wonderful Hunter looks. We continue to be so blessed. Amazing enough once we got home Hunter tolerated an hour of positioning and he rocked! He continues to be such a blessing! Go little man.

Hayden is coming upon the end of two weeks of casting. Thursday he goes to have his feet checked and recasted as needed. I am seeing progress so hopefully things keep going in the right direction.

Harrison went potty on the big boy potty on Monday night!! At least he didn't scream for once... I don't get it... really there are not monsters in the potty.

So, as you see just another day in the Woldt household. Hope this finds everyone well. God Bless

On To Week Two

Well, we are now on to week two of casting. Hayden has his foot measured and he is now at a +5 degree instead of -5. Elizabeth was very excited with the progress. She said that Dr. Edgar wants a minimum of +10 but would ultimately like to see +15. So... we will see what another week of casting does. Hayden is pretty excited about not walking on his tippie toes so I really really hope this works. I guess, at least we are stepping ( ha ha! ) in the right direction.

Boo bear is fabulous. We head to Milwaukee on Monday to see the Orthopedic doc just for a check.

Otherwise... same old same old on this end of the world.

Hope all is well on everyones end of the world. God Bless!

He Is Cast Man...

Hayden made it. He now has a cast on both legs. So far so good. 3 to 6 weeks is going to be a long time especially having to go to Green Bay once a week to have his feet looked at and recasted as needed. He was a pretty clever boy and made them look like Spiderman feet. I will have to try and post a picture later.

So, in the big picture we are good. Continue to keep the boys in your prayers. I will try to post pictures tonight.

God Bless

Tomorrow's The Big Day!

Happy Wednesday!

Well, tomorrow is the big day for Mr. Hayden.. casting day. Hopefully it ends up being less traumatic than the Botox shots were. I think he will be OK until he realizes just how long 6 weeks is. Please continue to keep him in your prayers, and that this takes care of our tippie toe walking. If this doesn't do the trick... surgery December 29th and another 6 weeks of casts. Oh what fun! One can only keep smiling! : )

Overall the Boo brothers are good.. That's my new slogan! I really think I need to get a picture frame with that on it! I just love it.

Have a fabulous evening! God Bless

The Little Monsters

Thought I would post a quick picture of the little monsters, they were oh so cute. The boys are good. We went Trick or Treating on Thursday night at a hotel that was hosting and event for kids with disabilities and their siblings. The boys had a blast. So, yesterday Boo and I stayed home and handed out candy, and let the rest of the boys go Trick or Treating.

So, all is well on this end of the world. Boo is doing fabulous.. we have had to increase his feds to help put on some weight, that sure is a change for him. we have went from putting on wait very easy, to the opposite. Otherwise, we are scheduled to go to Milwaukee on the 15th to have Orthopedic peek at his curve, since it is much worse since our little episode in the hospital. My guess is we will just keep an eye on things.

Hayden is schedule to get his casts on Thursday. He has recovered from the whole botox thing, at least from what I can tell. So, the next 6 weeks should be very very interesting. Please continue to say a prayer that this takes care of the tippie toe walking.

Harrison is good too, other than the fact he wants nothing to do with the potty. Well, I guess in time. It is amazing how much he had changing in the last few months. I guess that is what happens when you turn 3.

Hope this finds everyone well. Thanks for checking in on us. God Bless

He made it!!!

Well, today was the big day for Mr. Hayden, botox day. All was well until it came right down to it. Dr. Edgar explained what he was going to be doing and why it was so important. When he came back in the room, shots in hand, Hayden freaked!! Talk about breaking mom's heart. Thank goodness Hunter and Angie came along for moral support. Dr. Edgars nurse had to hold his legs, Angie held is butt down and I talked to him and held his head. But, he did it. What a strong big guy he was. Two shots in each leg and it was over. Next week will be casting... and then the 6 week process begins, should be pretty interesting.

I am so proud of my little man. Keep saying your prayers this solves our tippie toe walking.

God Bless.

The Woldts

We're Still Here

Yep, we are still here. Things have been good on this end of the world. Boo is doing fabulous... if I do say so myself. We have been monitoring his electrolytes but I think we finally have everything just where it needs to be. Such a great feeling.

Hayden is good. We are preparing for Botox on his legs on October 26th and then Dr. Edgar will be casting his legs on Nov 2nd... all this for tippie toe walking. Seriously, if it isn't one thing it is another. 6 weeks in walking casts is sure going to be a lot of fun, not!! Hopefully this does the trick... because otherwise it will be surgery right after Christmas. But, I still have to say in the big picture... it isn't a big deal. I keep saying it is better to get it figured out now.

Little Man Harrison is turning 3 on Tuesday... I can't believe that my baby is going to be THREE.. true meaning of time flys when your having fun... or something like that.

So, the Woldt's are just enjoying fall. It has been so beautiful the last month what could one possibly have to complain about. As each day passes we continue to thank God for all of our blessings. It sure has been a year of miracles.

Hope all is well on your end of the world. I promise to post sooner rather than later : ) God Bless. Thanks again for checking in.

Keep smiling : )

Quick trip.. Small Bump

That is sure what Boo is doing to his mom! Sunday morning the balloon in Hunter's J failed. Now, he has had his G pretty much since birth, and I can change that no problem. The J fell out, and I freaked out!!! Literally!! I guess it was just the anxiety of it all. Seriously, there is only one hole it can go in : ) After a took a breathe, giggled at myself, we had a successful tube replacement. Oh well, I guess I am even allowed to panic sometimes!

We ended up in the ER in Milwaukee on Sunday evening because of 400 cc's of dark coffee ground drainage from Hunter's Gtube. The Dr's were concerned he may have a GI bleed. They tested the drainage, and sure enough it was positive for blood, so boolicious earned himself at least an overnight in the hospital. They drew labs and his hemoglobin was fine, and everything else looked good except for his potassium was low, which didn't surpirse me since we hadn't did his refeed because of what it looked like. After doing and EKG to make sure the low potassium wasn't making his heart unhappy, they gave him a dose of Potassium and finally shipped us upstairs.

Our overnight was uneventful, I guess as uneventful as any night in a hospital could be. His hemoglobin stayed good, and his drainage cleared up. Imagine that... boo didn't read the book : ) So after talking with GI, we are just going to monitor things. Labs were redrawn and all was well, potassium was back to normal...this just confirmed that even though refeeding isn't the most fun thing to do, we do it for a reason. So, we were able to head home yesterday. A quick one night stay.

My Jonelle, one of Hunter's primarys from 4th floor was able to stop up for a quick visit. It was so nice to see her and watch boo get excited when she started to talk to him. We will visit again, but only for a trip to the zoo : )

Well, hopefully we have another little bump behind us. This weekend we are hoping to go to a deaf\blind weekend with the whole family. It will be fun, and I am sure there will be a lot of stories to tell.

Thanks again for all the thoughts and prayers. God Bless

I'm The Big Brother...

That is the look Hunter sends his brothers sometimes. If only I could ..........

It was pretty Kodak tonight. Hayden and Harrison were singing and mom was videotaping. I look over to only see Hunter trying so hard to tune them out.... he had this look like seriously.... what does a guy have to do to get some quietness in this place. Can you just be quiet, I am trying to concentrate. Hayden and Harrison finish their singing and Harrison proceeds to want to "help" or at least what he thinks as helping. Before I know it, Harrison is sitting there with the suction in one hand and wanting to eagerly suction Hunter. Only do I then see Hunter is detrached.... could be from his own doing or from the brother who "Thinks" he could be the big brother... If only Hunter could talk.... wouldn't you love to know what is going through his mind... it's like a Visa commercial...

Hunter trying to ignore his brother....reality.... Harrison detraching his brother.... priceless.

The guy can't even defend himself. Needless to say Hunter just looks at him like seriously..I can't believe that just happened and the whole time he is doing it with a smile.

New pics... family

Well, finally some new pictures...

Family

Then there is Boo..

And my loving Hayden

And last but not least Harrison, AKA Brutus

WOW

Name this handsome guy? Can you believe how AWESOME he looks!

Enjoying The Little Things

Well, that is what our life has been the last few months. Each day I get up, take a deep breath and thank God for all the miracles I have been blessed with this year. I was really in a slump about the year and everything my family has had to endure. But, I have decided to take a different look at things, and reflect on the miracles of the year. Each morning I remind myself how lucky I am, how blessed I am. Each day I give my boys hugs and kisses and remind them how much I love them.

This is truly a year of miracles... and just think the year is only half over!

Boo is doing fabulous and continues to amaze me with his smile each and every day.

God Bless

Rock Steady

Yep, that is what I say. Boo is doing simply fabulous. Other than a little face clawing, all is good. It is great to see how attentive he has been, and how happy and comfortable he is. It makes me think about how much his tummy was probably bothering him last year. This is the best, demeanor wise that I have seen him in a long time. We continue to pray each day for the blessing we have received over the last several months. If you would have asked me in January what life would have looked like now, I would never haven imagined it would be this perfect.

So, we are truly enjoying uneventfulness on our end. Hayden, interesting enough has been talking a lot about Hunter and asking a lot of questions. Some of the questions, I have to say are pretty tough to answer. It amazes me what he thinks about and how much he really "gets it." He is truly a loving and compassionate young man, or should I say almost 1st grader. That is crazy in itself.

Then there is Harrison, AKA Brutus. He is having fun trying mom and dad and giving us that naughty "Stink Eye." It is just amazing how much he has matured over the last few months.

This weekend mom and dad are heading away without the boys, the first time being away from Boo since everything has happened. I am a little nervous, but know he is in good hands with his wonderful Nurses. The other boys will be hanging out with family.

Hope this finds everyone well. God Bless

Stud Muffin

Yep, you guessed it... I am talking about Boolicious! Just wanted to share... Hunter wore his speaking valve all day yesterday!!! What a guy, he had a lot to talk about that is for sure. Just when I am amazed, he amazes me even more. So, boo is doing fabulous. He has been spiking a temp here and there but we are pretty convinced its because he is teething. I know, go figure. We are just watching things. In the big picture, he is doing a fabulous job getting back in to his routine.

Hope all is well on your end of the world. God Bless

Figures

So, I think Mr. Hunter is playing with me. The phone rang Friday afternoon. Boo was a little crackly and wheezing. His nurse Angie took him to the Dr. and guess what.... double pneumonia. Well, hopefully we caught this soon enough that he turns the corner fast. I tell you, it feels like if it isn't one thing it is another these days. I just have to remember, in the big picture its not so bad.

Otherwise, hoping for an uneventful day tomorrow.

Please keep boo in your thoughts and prayers. God Bless

Awesome!

I just don't even know what else to say. Hunter is doing AWESOME!! We are officially back to our self, other than being a little more tired. Unless we are really tired, or I am guessing if we get a cold, O2 is no longer needed. Hunter's surgical J has healed very nice. Yesterday boo had such a fantastic day, he was in four point for 45 minutes , according to his nurse he didn't really like it but he did it. He was all smiles when you talked to him yesterday, it was just wonderful!!

Last night I sat back and thought about the last 4 months. Wow, what a roller coaster. I have always known how lucky I was to have my boys, all 4 of them. : ) But wow! Hunter has taught us so many things, love, patience, hope, faith... just to name a few. He reminds us that sometimes you just have to believe. I will never forget how strong all my boys were through the last few months. How strong my husband was for being a single parent for 8 1\2 weeks. How strong and understanding Hayden was for going with the flow of things, and for Mr. Harrison adjusting as well as he did to mom not being around. Well, and then my boo, my true miracle. You continue to prove to everyone that miracles do happen. You continue to bless so many people and warm so many hearts.

So we continue to remember how blessed we are. We continue to remember, that Miracles do happen : ) God Bless

Ahh.... Home...

Yep, we made it. Hunter came home last night and a happy little guy he was to be there. Now, we are hoping to continue on with a journey of uneventfulness.

Thank you again for all your thoughts and prayers. Boo is doing good, and you could tell he was a happy little man to be home.

We will update soon. God Bless

Yep, Still Here

Yep, we are still in Milwaukee.

Hunter was still having some pain issues, but it looks like we now have the cocktail of choice figured out. I irrigated him this morning to see what we could get, and I was able to get some stool. But, since his tummy was a little distended this morning the feeds have stopped. Sounds like they will probably do a KUB (Tummy Xray) this evening just to make sure there are no visible issues. So, please pray for poop.

They did a chest xray this morning, and there is one questionable spot.. so they are going to keep an eye on that. They also took cultures since his temp has been elevated. Nothing has came back yet, and I am thinking it is all due to agitation.

So, another xray in the morning to check on things and we keep praying for poop. Otherwise we are just passing time.

Please keep boo in your thoughts and prayers. God Bless

Happy Friday.... Not

Well our little visit is turning in to a little longer than we originally expected. They just did rounds and are saying early to mid next week before boo goes home. Arghh.... I am trying to not be bummed out but I am. It is just so depressing here. It is depressing to start thinking about the fact we have been here more than home this year. Arghh.. But, I guess this too will pass. We should have everything out of the way and be able to enjoy a nice summer going forward.

Please keep boo in your thoughts and prayers. God Bless

Button Boy

Do you like the new knick name? Well, you have to learn to make light of the situation sometimes. He's the cutest button boy I have ever seen : )

Well, we had a good day on this end of the world. Boo is doing good. Hunter is still having pain, but it is manageable. Hopefully tomorrow we will be able to start some slow feeds. Otherwise, we are just sticking together and trying to pass some time.

Hope all is well. Please continue to keep Hunter Bunter Boo in your thoughts and prayers.

God Bless

Settled In

Well, Hunter is back in his room and settled in. His surgery ended up taking 3 hours due to all the scar tissue that he had due to his pull through at birth. So, what was suppose to be a one night stay is looking like 5 to 7 days. I am trying to stay positive, but it just sucks. Granted everyone here is wonderful, but I know I have had enough of this place and I am sure Hunter has also. But, in the big picture he is doing pretty well. So, we will count our blessings and be thankful for all we have.

On another sad note, Hunter's little girlfriend Autumn recently passed away. Please keep her family in your thoughts and prayers during this difficult time. Sweet cheeks, we think of you often...and are blessed to have known you.

So, tonight we continue to say our prayers and thank God for all the blessings that we have. Please keep Boo in your thoughts and Prayers.

God Bless

Waiting

Well, Hunter went back to Surgery at about 2:00, so now we wait and anyone that knows me that is not one of my finer qualities : )

So, hopefully within the next hour Hunter will be out and heading over to the 4th floor here at Childrens in Milwaukee.

Please keep Hunter in your thoughts and Prayers

God Bless

On The Road Again

Well, that is the story of our life right now. After being in Milwaukee Friday and Monday, we will be heading down again on Wednesday. Hunter is scheduled to get his surgical JTube on Wednesday at 1:15, along with a new set of ear tubes. Dr. is saying minimum of one night in the hospital, because the surgery may not be as cut and dry because of scare tissue he has from the pull through he had shortly after birth for his hirsch sprungs. Arghhh.... can't anything just be easy.

I am a little nervous about things, but in the big picture I am not sure why. So, hopefully after this is all said and done, we can go back to "Normal." Just want our uneventfulness back, is that really too much to ask??

So, in the big picture nothing to complain about, that is for sure. Hunter is doing fabulous... if I do say so myself. I think Dr. Sood was simply amazed at how awesome he looks. What can we say, he is a rock star!!

As for the other little guys. Hayden is going on a field trip today... and Daddy is going along, so that should be fun. And Mr. Harrison... love this stage where we think we are independent but we really are not.... Big news for him is he is starting to want to sit on the potty. He doesn't go, but at least we are heading in the right direction.

So, our three ring circus is doing well. Please keep Mr. Hunter Bunter Boo in your prayers tomorrow. Please pray for a safe, successful and uneventful surgery. Please pray for a quick recovery so we can head home and get back to "Normal."

God Bless

A Plan... I think

Well, I think we finally have a plan. After being in Milwaukee again to get a new J\G tube, I think we have a plan. Hunter is scheduled for a surgical J to be placed on Wednesday. We are hoping it is just a quick one night stay in the hospital and back home we come. No more weekly or biweekly trips to get our J\G replaced, thank goodness. I have for sure had enough of that, and I am sure Hunter has also.

So, waiting to hear from Dr. Gordon's nurse, and hoping we don't have to go to Milwaukee Monday for a Preop appointment. That would be really stupid, personally. I said I would come down late Tuesday or early Wednesday for him to see Hunter. I love Milwaukee and all, but not that much.

Hope all is well. Thank you for checking in on Hunter. God Bless

Things That Make you go Hmmm...

Well, we are still battling the J tube madness. We go to see GI next Monday and the Surgeon is going to consult with us regarding doing a permanent J tube. So, we'll see how that goes.

Hunter's temp is a little low, starting last night. He slept most of the day yesterday, but didn't sleep the night before, so not sure if that is just him catching up or what. So, we'll see how his temp is running this morning, and then probably touch base with the Dr. to see what he things. I am a little sensitive to the whole sleeping and low temp issue since those were both symptoms before he went septic. So, we'll see how he is later this morning.

Please continue to pray for sweet Hunter. Have a great day. God Bless

J Tube Madness

Yep, that is what I have to say. Hunter's J Tube is going to drive us over the end. We have a two week cycle going. So, on the phone to GI again today. This madness has to stop.

So, enough complaining. Tomorrow we head to Milwaukee to see ENT, and the Pulmonologist just for Trach clinic, so it should be an uneventful trip.

As for our weekend, it was very nice. We had a low key weekend, in the big picture, and it was just what we needed. It was very nice to be home all weekend as a family.

So, overall pretty uneventful at the Woldt house and we will take it. I promise one of these years to post some new pictures.

Hope everyone had a great Easter. God Bless

Coming Home

Today we will be heading home! Yeah!!!! Hunter is doing pretty good. His electrolytes are back on track, for the most part. His aggitation level is still higher when he has tummy cramps but they are going to give us a prescription to give him when he is having issues to help keep him comfortable. We will have to get labs probably on Monday just to make sure all still looks well, but we will be home! I can't wait.

Thank you again for all your prayers and support. God Bless

Today's Not The Day

So, today is not the day we will go home. Hunter had a tough night, but I was still optimistic we would be heading home today. I was able to get the Dr to agree reevaluating this afternoon if we could get him comfortable. That was until his blood work came back and his sodium level was high. Hopefully, we can get his sodium level down to a point they are not as concerned, and we can head home tomorrow.

Please continue to pray for Mr. Hunter. God Bless

Go Figure

Well, Hunter has the rotavirus. Just go figure. It is nice to know what was causing his issues. We are doing good. All the blood cultures continue to be negative. His lungs were a little wet today, but pending cultures remain negative, his xray looks good in the morning, and he continues to tolerate his feeds, we will be heading home tomorrow. Hooray!!

I talked with GI about potentially a surgical J tube vs the GJ that he has now. They are hopeful on trying to do G tube feds again, so he wants to give it another 4 weeks. Interesting, since we currently have no plans to start G feeds. We have only been doing J feeds and venting the G since we have been home. So, looks like we have some details to work out.

So, it is a happy Tuesday on this end. Please continue to keep Hunter (aka boolicious) in your thoughts and prayers.

God Bless

Don't Even Ask

That is how we are feeling this morning. Hunter was admitted to Milwaukee last night, or should we say early this morning, for abdominal pain. We are hoping this is just a viral issue, but better safe than sorry. They drew cultures last night due to an elevated temp, so now we wait. His electrolytes and potassium were out of whack, and we did some replacements on that and we are doing better. Hunter is finally resting peacefully for the first time in days, it is very nice to see. GI and Surgery will be stopping by hopefully this morning to share their thoughts. So, we wait. Have to love that : )

Please continue to keep Mr. Hunter in your thoughts and prayers. We will update you all when we know more. God Bless

Stinker

All is well on our end of the world. Hunter did decide to cause a little commotion on Saturday. Hunter's J tube was plugged. We really did not feel like going to Milwaukee to visit just yet. We were very lucky to be able to talk with Dr. Gordon, he was so helpful. Theda Clark here in the Valley would change the tube, but didn't have the right size. Dr. G talked with GI and they were OK with trying a little bit longer tube, but if that didn't work it would mean putting in a G tube for the time being and heading to Milwaukee on Monday. The Radiologist and the staff at Theda in IR were wonderful, oh so helpful. The new tube went in like a charm! Hunter, again you are simply a ROCK STAR!! So, after several hours of phone calls and a quick run to Neenah, Hunter was good to go.

Overall, Hunter has been doing very very well. We have started to do a few trials off the O2 to see how he does. So, hopefully in the next few weeks we can get off the O2 during the day and maybe just down to O2 at night. Hunter has not needed any Ativan for agitation, so that is wonderful! He continues to amaze us. He was a little agitated last night, not sure what that was about, hopefully nothing, we'll see how today goes.

Hayden and Harrison are both doing well. They have adjusted us being back together as a family. It has been so nice here they have enjoyed playing outside, but it sounds like it is going to be cold again this weekend. So, the weather is just a tease.

Thanks again for checking in on Mr. Hunter. We appreciate all the thoughts and prayers, he continues to be our miracle. God Bless

Home

That is the word that I just love saying! We are home!! We made it home on Saturday afternoon. Sorry it took me so long to update. We have been getting adjusted. You can tell Hunter's agitation has decreased now that we are home. Hunter is not quite ready to wear his hearing aids when his brothers are around, I think that is a little too much noise yet for him. Monday and Tuesday Hunter and I spent hanging out, it was very very nice.

Yesterday was my first day back to work, and it was great to have that sense of normalcy. It was so nice to see everyone! I am so lucky to work for such a great Company, and work with such loving and caring people. I am truly blessed.

To all our friends in Milwaukee, I promise I will get some updated pictures posted. Of course we are going to have to post some pictures of Hunter and some of his wonderful new friends. Watch out nurses : ) We miss you all in Milwaukee, make sure to tell everyone Hunter says hi and that he is doing wonderful.

We continue to take life day by day. We continue to pray for Hunters continued recovery. We are so blessed and so proud of our little man.

Thank you again for all the love and support.

It's Really Happening

We are coming home! Looks like tomorrow is the big day! We are so excited we can't stand it! It will be so nice to all be home again together.

We cannot begin to thank everyone for all their love and support over the past 2 months. Hunter is so blessed to have so many people that love him.

We look forward to getting home and settled, and celebrating his arrival home.

Thanks again! God Bless

The Big D

We have started to really talk about the big D for Hunter, discharge but don't tell him : ) We are aiming for the beginning of next week. Hunter is still on a little O2 which we anticipate he will be off of within the next day or two. He is at his goal for pediasure feds, now we just need to add the water and get him up to the 52 cc's maintenance an hour. His agitation is getting much better. He still startles easier than he use to but I think some of that will just get better with time. As for our bowels, so far so good I would say.

I can't believe that it has been two months and we are going to be going H (home), don't tell Hunter either. : ) I continue to be amazed by what a miracle I have been blessed with.

Thank you again for all your love, prayers and support. God Bless

Miracles Do Happen

That is all I can really say, miracles really do happen. Hunter had his colonoscopy and motility study yesterday. He woke up from the anesthetic with a vengeance, but after we got him settled things went a lot better. The motility study didn't finish until 2:30 and then the GI doctor came up to take a look at the results. There was a look of amazement on his face, and he turned to me and said the results were not what he had anticipated. Dr. Sood said that it appears Hunter's small intestine is working 60% to 70%, which he was very happy about. Hunter's large intestine also appears to be working at an acceptable level. Dr. Sood was very happy that we did the motility studies and his recommendation at this time is to start J tube feeds. NO SURGERY!! Talk about a true miracle. Just a few months ago we thought for sure Hunter needed an ileostomy and now we are being told no surgery at this time. I get to feed my little boy!! I can't explain how excited I am.

So, right now we just have to continue to tolerate not being on CPap, and get to our maintenance feedings per hour of 52cc's and we can hopefully come home!! We are starting to bring up the big D word.

We are oh so blessed. I can't even explain how blessed we are. Hunter has been a true miracle since the day we had him, and he continues to beat the odds with a little help from some friends. See, miracles do happen, you just have to believe.

Thanks again for all your love and support and for keeping Hunter in your prayers. God Bless

It's A Big Day

Well, today is the big day. As I am typing this, Hunter is down for his motility study. As we walked down the hallways I thought about the fact they should probably give parents anxiety meds. My stomach was in knots! When the doors of IR opened there waited the GI doctor and the anesthesiologist, who actually is a critical care doctor that knows Hunter well, his name, Dr. Scott. At that moment a sense of peace came over me. It was a relief knowing that he would be there for him. He also has his nurse Jonell today who is oh so wonderful to him, so I know she will be standing next to him holding his hand. This helps me wait patiently and be at peace knowing he is in good hands.

Even though this is the day we have waited so long for, I sit here wondering what the tests will bring us. I sit here and think about the last almost 8 weeks and everything that has happened. I sit here and think about how strong my little Boolicious is and how oh so proud of him I am. I sit here and think about how lucky we are to have such loving and supportive family and friends. I think about how many lives Hunter has touched, and how many more he has touched in the last 8 weeks.

So I sit here, and try to wait patiently and prepare myself for the hours to come. The tests will run until 2 or 3 this afternoon, but by tonight we should have our answers. Our answers that we have waiting oh so long for. The answers that we need to make our little man happy and comfortable again. The answers we need to get to the next step, home.

Thank you again for all your love and support. Please continue to pray for my sweet boy. God Bless

A Plan

Things are going well on this end of the world. Hunter has been having tremors, which after further investigation appear to be related to a decrease in his Keppra, his seizure med. They apparently had decreased his Keppra due to kidney function, which along the way I missed it somehow. We have upped his dose to the normal dose and the tremors seem to be better by over 50%.

Hunter is still growing the bacteria in his Trach that we were previously treating him for. We started him back on the antibiotics. Overall he seems to be doing well with it so all great signs. May just a little bit longer on the antibiotics.

Yesterday, this catheters for dialysis were pulled, which is huge! We were able to sit and hold him and he was able to get up in his wheelchair. This is so awesome! They also pulled his foley catheter and he is peeing like a champ. It is celebration time.

My friendly neighborhood GI doctor stopped by yesterday and it appears it is a go for Friday. Friday Hunter will go down at 7:30 in the morning to have a camera placed in hi Colon and through his GJ Tube. That procedure in itself will take around an hour or hour and a half. He will then come back up to his room to be monitored, fed, to watch how things are moving through is small and large intestines. This monitoring will go on until 2:00 to 3:00 in the afternoon and then hopefully we will have the answers to what we had originally came here for.

The light continues to shine at the end of the tunnel. We continue to pray for healthy lungs and to answers to come from our tests on Friday. Whether those answers are all looks well, or that we need to proceed with surgery, it doesn't matter.

I have been blessed with the greatest gift, my boy, and that is what matters.

Thanks again for all your love, prayers and support. God Bless

Doing Good

Hunter continues to do well. Late last week they trialed him off the Cpap and just on trach collar. Hunter did pretty good for a day, but started to struggle. Hunter was 300 fluid positive which made his lungs a little on the wet side, which they believe caused him to have to go back on Cpap. In the big picture this is really not a big deal.

Hunter continues to pee like a champ, but the catheters are still in place as his levels are not quite where they want them yet. Hunter is still a little more aggravated than normal, edgy, elevated temp, and tremors, all believed to be related to withdrawals.

Today will be the day I will be talking with GI to confirm the plans for the colonoscopy and motility studies on Friday. They converted his mickey button to a Jtube on Friday, and he is getting pedialyte through the J at a rate of 40 cc's per hour and doing well with that. This is such a huge accomplishment.

Hopefully we continue to move in the right direction so we can bust out of here. Everyone has been so wonderful here. The nurses and the Dr's are all amazing. We are truly blessed to have such a great facility so close to home.

Please continue to pray for healthy lungs, for the withdrawals to pass, and for us to figure out our GI issues so we can go home.

We continue to be amazed by Hunter's strength and perseverance. We are so blessed.

Thanks again for all the love and support. God Bless

Light At The End Of The Tunnel

I can finally say I am seeing the light at the end of the tunnel. Hunter looks awesome. He continues to be off dialysis. Some of his blood work is still elevated, and once that hits a certain point, they will remove the catheters that are used for dialysis. I am hoping by Sunday. He continues to do well with the vent changes, and the hope is to try and take him off the vent either later today, or tomorrow to see how he does. They discontinued his daily xray since he is clinically improving so well, and we will just order as needed.

So, we are finally going to be able to start addressing the issue we were originally coming in for. Hunters tummy still is not tolerating feds. His nurse Joyce had a fabulous idea about converting his G-Tube to a J\G Tube to see if that would help him tolerate his feeds. So, we talked with GI and they thought we could give it a try. So, hopefully some time today he will be going to radiology to get that changed. Please continue to pray and keep your fingers crossed that this helps with his feedings.

So, we are seeing the light. Granted, we still have some things we need to get figured out and wrapped up before we can go home, but home is coming in to site.

Thank you again for all your love, prayers and support during this difficult road. It has been a long rough road but I knew we could make it.

God Bless

True Blessings

This weekend continued to bring us true blessings. Hunter remains off of dialysis. He is making a ton of pee, and some of his blood work has gone down which are great signs that his kidney function is improving. We are oh so so blessed. We have also been able to start decreasing the vent settings little by little this weekend which is another huge milestone for us. Hunter's xray looks a tad bit bigger which reminds us that we are moving in the right direction.

So, we are taking steps in the right direction. Tomorrow we will see what the kidney Dr's have to say about pulling his mahooker (no idea how to spell). This is the catheter used for dialysis. If that gets pulled tomorrow that is huge!! We will also be talking to GI tomorrow about starting some slow feeds, maybe just some pedialyte to start. I am very very nervous about this and curious what they are going to have to say.

Please continue to keep Hunter in your thoughts and prayers. Continue to pray for healthy lungs, good filtered pee, and a healed tummy.

God Bless

Tummy Issues

Well, we hit a little bump in the road yesterday. Hunter's stomach was becoming distended and we pulled almost 300 cc's of blood and undigested food from his stomach. After much debate, GI scoped him and found that he had a GI bleed, the inside of his stomach appears "scratched", my term, due to all the stress and him going septic 6 weeks ago. So, we have added some meds to help coat and heal his tummy. The critical care Dr's will be consulting with GI to determine what the plan is feeding wise.

Next in line is our Kidneys. We are still off CVVH (Dialysis) for the time being. Of course one of the meds they put him on to stop the GI bleed decreases urine production. Seriously I feel like we can't win!! So, we added a few diuretics and we continue to make urine. Hunter ended the day at about 400 cc's positive. So, a few adjustments will be made today. We will decrease how much fluid he is getting in to hopefully help him get more fluid balanced and we will attempt to use a few diuretics if needed. We are hoping that his kidney's start filtering the urine better, as some of his numbers are high. If his numbers remain high, which means his kidneys are not doing a good job filtering, we may need to put him back on CVVH temporarily at least to help him out. So, please continue to pray for lots of good filtered pee.

As far as respiratory, we are not making too many changes there. We are keeping the vent settings as is, to help him try and rest. His X-ray appeared a little bit better this morning, so we continue to give that time. We have to get a few of the other things in line and under control first.

Last but not least, Hunter was having some weird behaviors. Twitching, startling easy, elevated temp, and a heart rate that was a little higher than normal. It appears Hunter is going through withdrawals. Yes, that is what I said. Never in my life did I think I would need to watch one of my children go through withdrawals, especially at 8 years old. Talk about heart retching. He is finally sleeping really good, the first time in 4 days.

So, we continue to pray for healing and guidance. Please continue to pray for lots of good filtered pee, healthy lungs, a healed tummy, and an overall good recovery.

Thank you again for all your prayers, love and support during these hard times.

God Bless

Its Always Something..

Yep, just as the title says, it is always something. Today, we pulled over 200 cc's of blood and undigested feeding from Hunters stomach. So, another thing we need to try and figure out now. This waiting on GI is going to drive me crazy, that is for sure. Hunter continues to do a great job producing urine. The concern right now as far as pee, is he is not filtering the urine well. We are holding tight on the kidney dr's to decide if we need to put him on dialysis a bit or what our next steps should be.

So, we sit, we wait and attempt to be patient. Up down up down, this is just like being on a really big roller coaster. I continue to feel like we take two steps forward and one back. I try to remind myself that in the big picture, we are still in a better place than we were 6 weeks ago. I just want my boy better, is that really so much to ask.

Please continue to pray for my sweet boy. Pray for healthy lungs, filter pee, and for us to find the cause of the blood.

God Bless

Let There Be Pee!!

I thought that would catch your attention! It's official. They took Hunter of dialysis this afternoon. They put a foley catheter in so they could monitor his urine output, and will see how he does until morning. If needed, they will give him a diuretic to see if they can help challenge his kidneys. So far, so good, we are making pee. Who knew one could be so excited about it! : )

The decision was made to take him of the dialysis so we can start getting him out of bed to encourage his secretions to start moving. When they would do the circuit changes for the dialysis machine we would hold him and just that little movement would help so much. So, the Dr's made the executive decision that this was the best thing, even if we would mean staying on the vent a few extra days.

I am so excited and nervous I can't stand it. I am like a giddy teenager!! I am so so proud of him, he continues to amaze me each and ever day. So, keep praying for lots of pee and healthy lungs. It is amazing the power of prayers.

So, if we keep plugging forward, out last day of antibiotics is Feb 22nd. As long as we remain healthy, off dialysis, and our lungs have improved, GI will consider doing their motility studies after that. So, hopefully we will get our GI issues figured out and all settled before we go home.

Thanks again for all your love, prayers and support during these last few weeks. God Bless

It's Official

It's official..... Hunter is the big 8 years old!! What a great celebration! We had a nice time with Hunter for his birthday. We ordered pizza's and cake. The Dr's sang happy birthday during rounds, and then the nurses all came in and sang again to him later in the day. This birthday is huge to us under the circumstances. I can't thank God enough for the blessings he has given me. We are so lucky to be able to celebrate with Hunter. On top of everything, Hunter looks great. He is more alert, the continue to go down on his vent settings, and are starting to let him go more fluid positive to help challenge his kidneys. We are so proud of our boolicious! Two of Hunter's primary nurses had a T-Shirt made for him that says boolicious on it because that is what I always call him. He is my Hunter Bunter Boo and he is oh so boolicious! : ) We are so blessed to have such wonderful Dr's and nurses here. We have sure made some great friends. I will try to get some pictures posted in the next week or so, the cake was a hit.

I went home on Friday afternoon and surprised Hayden by picking him up at school. He was so excited. We then went and picked up Harrison from the babysitter, who was also very excited, and headed to Pizza Hut for dinner. After dinner, we stopped and grabbed some moves and headed home to spend some snuggle time together. Saturday morning we went to the Children's museum and then to McD's for lunch, we were even able to meet Clifford. It was a great time. Harrison was pretty upset when I left on Sunday morning... I cry when I leave Hunter, I cry when I leave Hayden and Harrison, I just can't win.

Overall, we are doing well. We continue to be blessed each and every day. Thank you so much for all the prayers and support. Please continue to pray for healthy lungs and lots of pee. God Bless

5 Days And Counting.....

To one Gre888t birthday! Can you believe that Sunday is Hunter's 8th birthday. I am so excited, even more excited than usual if that is possible. Child life is going to help us decorate Hunter's room for the occasion. I am getting a cake and ordering pizza for everyone to help with the celebration. It sure is going to be a Gre888 time.

Today has been a good day. Hunter seems to be turning the corner. His PH level has Is up to 7.29 which is great, and his blood gases have came back down to normal range. We are off all cardiac meds at this time, which is another win win. We are down to 40% O2 on the vent, but we are keeping his rate and pressure support up there for the time being. We also took him off the Nitric Oxide (I&O's) which is huge. The Dr's said that we will need to just take our time weaning him off the vent. His Xray is continuing to move in the right direction. As the Dr stated, it still looks like a heavy snow storm on Xray, but the snow is starting to let up. : )

So, it comes down to time and a lot of patience. Today, Hunter opened his eyes more than he has been for the past week. He is "looking" much better. I can't explain how proud of him I am. He is such a trooper. I look forward to the day we are able to go home and snuggle on the couch and watch HGTV together. So, no matter how long away that really is, it doesn't matter.

Thank you again for all your prayers, love and support. Continue to pray for our lungs to heal and lots of pee : )

God Bless

I Hate Bugs

Literally I really do hate bugs. Hunter grew another type of bacteria out of his trach aspirate they took when the bronched him. So, we have adjusted his antibiotics and he will hopefully start making bigger strides. Our O2 is up today. We have turned off the Norepi, cardiac med, and are down to .01 on the Epi, another cardiac med, both great news. Our blood pressure has been rather stable today which is great to see. The last few days if you touched Hunter his blood pressure went through the roof. We were actually able to turn him tonight with out him getting wild. We are down to 50% O2 on the vent. We did have to up his rate to help him blow off some CO2 since his gases have been running high. Overall I think we are starting to turn the corner. Hopefully tomorrow during rounds I will hear the words, "The Xray is looking better." So, in the big picture things are moving in the right direction, it is just a slow process.

I keep reminding myself that patients is a virtue, but man I am tired. I want to see those big blue eyes again. I want to hold my boy close and kiss and love on him. Is that really so much to ask? I love him so much and I know that I am truly blessed. So, tonight I sit and continue to remind myself that patients is a virtue.

Thank you again for all the thoughts and prayers. Please continue to pray for healthy lungs and lots of pee.

God Bless

It's A Complex Combination of Things

AKA, my new key phrase when I just don't want to talk about it. I am mentally exhausted. Hunter had a rough weekend but appears to be turning the right corner again. His X-ray appeared slightly improved this morning, which is really good news. We need to get healthy lungs at this point to start working on anything else.

After the bronch last week, things started to head down the slope in the wrong direction. Saturday night was a rough night, he couldn't hold his O2 stats, and was having a hard time breathing. After some steroids and some tweaks to the vent and 4 additional antibiotics we appear to be turning the corner.

I had a long talk with Hunter last night telling him I just wanted to hear that his X-ray improved when then did rounds this morning. He listened : ) Lungs are looking a little better.

I keep trying to remind myself that we are still in a better place than we were 3 1\2 weeks ago, but it still sucks. It sucks that we can't move forward until our lungs heal. So, that means we need lots and lots of prayers for healthy lungs so that we can start back working on kidneys.

We continue to be blessed and have nothing to complain about, that is for sure. Sunday, Hunter's 8th birthday continues to approach quickly. I am working on getting his cake ordered and figure out where we should order pizza from for the celebration. What a great day this will be!

Thank you again for all your thoughts and prayers. It means a ton. Please continue to pray for healthy lungs and lots of pee.

Thanks again and God Bless

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