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