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