Sunday, January 11, 2015

Dearly Departed Drawings ~ Kole {day 376}

January 3, 2009

"The frozen platelets Kole received tonight didn't quite make his liver function levels perfect enough for surgery yet. We got the news at about 9pm that, although the levels are thisclose to being within normal range, they want to give him another transfusion for insurance. Kole was sooooo grumpy tonight because he hadn't been allowed to eat or drink since 1pm, just in case they had done the surgery tonight. He kept saying, "I want sometin' to drink, please, mama. I want bubbles (soda)." They said go ahead and let him eat and drink until midnight, then he will be NPO again. He spiked a fever tonight, 39.3 C, and was given Tylenol, and it came right down to 37 C (normal). His morphine has been regulated intravenously, the dosage has been dropped but the frequency increased to every two hours, and he even ate some "chinese noodles" tonight (translates to shrimp lo mein). He has been really sleepy and still REALLY uncomfortable. I can't imagine his belly could get any bigger without bursting. He just wants to be held all the time, in a reclined position, or on his side. After his transfusion finishes around 3am this morning, they will do more blood work, and if things are A-ok, he will get surgery in the morning, tentatively for 8am. Please pray with us. We'll inform you of the outcome tomorrow. We absolutely cannot wait for the relief."

January 4, 2009

"Sorry for the delay in updating - hectic times abounding. Yesterday morning we eagerly/anxiously waited for the big orchestration to come together, and finally, at around 1030/11am we got transferred back to Pediatric Intensive Care Unit (PICU), where Dr. Bob performed the procedure. We felt a little deja-vu, and quite a bit of displeasure being back in the PICU again, even for a short time.
The reason they kept pushing the time of the procedure back was because there were varying thoughts/ideas on how to do it among the doctors. The ultrasound tech had a hard time finding a nice, big, open pocket of fluid for the doctor to insert the needle/catheter. Kole's bowels seemed to obstruct every angle they tried, and it is extremely risky to enter near the bowel for risk of puncturing it. Turns out his abdomen isn't just one, big fluid-pocket, but rather many smaller pockets of fluid connected together. Finally, they found a pocket large enough to attempt to enter, down by his left hip bone. Next they toggled around ideas on what size/length needle to use, etc. They were trying to be extremely conservative, as risks abounded. They were going to see if they could refrain from using sedation, as the local anesthetic should have been adequate to keep Kole comfortable on top of the morphine he already was getting, but when Kole saw the masks on everyone around him, he freaked, and the doctor called for anesthesia, and Kole went under (ketamine/versed). The sedation could also be risky as Kole's lungs are under a lot of strain, and too much sedation could cause a lapse in breathing. Kole was fine, praise the Lord. Next, they kept fluids running because apparently when you drain a lot of fluid off the abdomen, the fluid in the bloodstream will try to rush into the abdomen to compensate, and this can cause a fatal drop in blood pressure. Kole remained stable through the procedure, praise the Lord. They punctured through the abdomen while being guided by ultrasound, and there was so much pressure built-up inside his poor little belly that the fluid just started bursting out. They managed to collect what they could (over 300ccs total I believe), and sent it off for testing. Dr. Bob said all went very well. They were actually hoping to get more fluid off of him than they did, though. So it appears as though we will be having another paracentesis tomorrow or Tuesday, and this time I believe they will leave the catheter in (yesterday they didn't - it was kind of a trial-run). We will be referred to Interventional Radiology for the next procedure, as they are now interested in doing it for us, seeing Kole yesterday, and the amount of discomfort he is in, it touched them and they are willing. For now he has a colostomy bag over the insertion site, and it is actually still draining, which is good for two reasons: 1 - that means he is still draining and getting relief, 2 - there's less chance of an infection/sepsis because the fluid is pushing things OUT. We spent the rest of the evening relaxing and helping Kole feel better. He ate and drank A LOT when he was able to, and even took a nap on his belly, which he hadn't been able to do before. So even though we didn't get as much as we would've liked out of him, he did find some relief, and will be getting more.
The next event that occurred was early this morning at 4am. Kole's blood oxygen saturation dropped significantly, 95-100 is the range you want to be in, and Kole was in the low 80s, like when he got diagnosed in June and flown up here. There was slight panic, and oxygen was brought in. He seemed to be grunting a lot, and had shortness of breath to the point it woke me up. Then, he had an EXTREMELY large bowel movement, "adult-sized" the nurses joked. He hadn't gone in a couple days, and let me tell ya, this was relief he needed, too. He's usually a very regular boy. His oxygen levels came back up a bit on their own after the movement, and everyone felt perhaps the struggle of "bearing down" is what kept his oxygen low. I feel the relief of the fluid off the abdomen allowed room for his bowels to move, and that correlated with the drop in oxygen as he was struggling to get it out. They play it safe here, though, and ordered a chest xray at 430am to make sure the lungs weren't filling up. They weren't. Turns out there is small area in the top right lung that could just be from the tumor, or it could be atelectasis (slight collapse), or pneumonia, but appears to be unchanged since the previous xray, or just slightly bigger. Also, when they tested the fluid that came out of his abdomen, (which was a clear, yellow fluid that resembled urine) they found some white blood cells which could be nothing or could be a sign of infection. So to cover all bases, they put Kole on some intravenous antibiotics. He is doing better today, but is still on oxygen for comfort.
Nothing could hold us back from going to see Sesame Street Live, though!! Kole HAD to see his friend Elmo, and this morning after much discussion, we were cleared for a pass to leave the hospital for a few hours and go enjoy ourselves. We had an awesome time and spent way too much money on food and balloons. We had very posh "skybox" seats, but next time may prefer to be down by the stage. I don't think Kole felt he was close enough to Elmo. Kole's friend Tay-Tay from up here at the hospital showed up as well, so it was a group affair. Kole had a great time for the most part, although he was pretty medicated, and did fall asleep right before the grand finale (missed the streamers and confetti explosion). We got LOTS of pictures so hopefully we will be able to get them posted on here for all to see.
Right now Kole is relaxing in his room, we're in 7263, and he is watching Finding Nemo and sucking in some oxygen. After much distress, the nurse managed to get a nose-cannula into Kole's nose, so he is more comfy. He is still getting maintenance morphine and antibiotics. I have no idea when the next surgical procedure will be, but would prefer it be tomorrow. They will have to recheck his liver platelets again, as well, before they can do it. So, hopefully we will be home by mid-week. They will send us home with morphine, antibiotics, and oxygen.
God Bless You All.....thanks for everything.....keep on praying.....every day a miracle......"

January 5, 2009

"Here's what's happening in the Kole saga today....Kole had to be NPO (no food or drink) all day 'just in case' they orchestrated a team together to get his next surgery done (Interventional Radiology is hard to get in with). Turns out things didn't go quite as planned, and mommy and daddy were extremely frustrated because little Kole didn't eat since 10pm last night, and it was 4 o'clock this afternoon and we still hadn't heard the plan (and of course mommy and daddy can't eat either, in front of Kole). Finally, they came in and said "Let him eat!" and scheduled the surgery for tomorrow morning (Tuesday). So we are pigging out this evening.
Dr. Neely (awesome, awesome man) is the doctor on the floor this week, and although we haven't had a whole lot of experience with him before, we are glad he was here with us today. He explained the plan to us, which includes Kole getting sedated tomorrow morning, again, to put a "pigtail" catheter in place via Interventional Radiology, which will be a more permanent line of drainage for the fluid in Kole's abdomen. They can't guarantee that this will drain all the fluid, either, because of the "pockets" of fluid, but our hope is that this will be a lot more relief than he experienced Saturday. They are also going to be starting Kole on some more aggressive diuretics after the surgery. The biggest risks involved are the same ones as before, including bleeding, infection, puncturing the bowel, lapse in breathing, and in severe cases, fatal blood pressure drop. We are confident Kole will be just fine, under the Lord's care.
In addition to the catheter placement, we requested that they please, while he is already under sedation, put a feeding tube/NG tube into his stomach. We feel that his diet is lacking the essential nutrients that he needs to make him feel his absolute best, and we can "bypass" his tastebuds and get the things he normally wouldn't care to eat into him (you know, healthy stuff). The doctor was hesitant at first to grant our request, probably because she feels it would be just "one more log" on the fire of things to deal with/take care of at home. But we insisted. It was a request, not an issue of hassle! Dr. Neely really agreed with us. He gave us so many ideas of what we can "feed" Kole through the tube, which is pretty limitless. It is refreshing to hear an Oncology Doctor talk about alternative medicine/nutritional medicine. We are excited about this.
So, tomorrow he gets surgery for the catheter placement and feeding tube placement. We still have no idea when we will be home, Kole will have to be observed. For now he remains on the antibiotics, morphine, diuretics, and oxygen, and is doing okay. He is tired a lot and can barely talk through the sedation, although you can tell he really tries to. He also is not walking, he can stand, but it is painful for him, I think, because of all the weight and pressure built up. We really want to get him moving to promote circulation, lung health, and general health overall, which is the reason for the surgery. He is not going to be happy when he wakes up in recovery tomorrow with all kinds of tubes popping out of him, but it's all for the greater good of comfort. Please say an extra prayer for Kole. We know this is in God's hands. Always has been. Always will be.
Keep you posted on the outcome, and of course, the PROGRESS!!!"

January 8, 2009

"This is Tasha updating, one of Renee's best friends. Renee and her husband are enjoying every second with Kole...Kole is comforted by having them by his side, therefore stepping away to update is not a possibility right now. Hence, my filling you all in on their behalf. I will begin by reminding you how thankful they are for all of your support, prayers, contributions, fundraisers, and kind words. As always, it is all of you, along with God, that are carrying them through this trying season of their life. I will be vague with my words because I don't want to misinform anyone, and I pray that God will give me the right words to send to you right now.
Kole had another paracentesis done yesterday, it was a success, they were able to relieve his abdomen of A LOT of fluid (I believe Renee told me it was around 1600 cc's total...imagine a liter or 2 of fluid in your abdomen), what a relief and answered prayer for Kole's comfort! They also placed a feeding tube at their request so that Kole can continue to get the nourishment that he needs. They kept a drain in his abdomen so that the fluid is able to continuously drain, so this procedure wouldn't have to be repeated. While the procedure was a success, and Kole is able to rest more comfortably, the removal of such a large amount of fluid from Kole's body caused an imbalance of a protein in our bloodstream called albumin. Albumin is necessary for the function of our kidneys. There was a large amount of albumin in the fluid in Koles abdomen, and when the fluid was released, the albumin was pulled from his bloodstream, resulting in a deficiency. This, in turn, caused Kole's kidneys to slow down. The doctors found it necessary to give Kole an albumin transfusion in an attempt to get his levels back to normal so that his kidneys could kick back into action. Renee and her husband had noticed little urine output from Kole, and also a great deal of edema in his legs. Their plan at this point was to be educated on how to balance his fluid intake and output at home so that his blood levels can remain healthy. After his transfusion, our prayers were that we would see some wet diapers and reduced edema, a sign of normal kidney function. As hours passed and Kole's diapers remained dry, the doctors came in and expressed concern for what they were seeing. They believe that if the albumin transfusion is not fixing his kidneys, that his organs may be simply growing tired as a result of the pressure that his tumor is causing. Fluid is accumulating and at this point it is not exiting the way it should. A team of doctors, along with Hospice, sat down with them and asked them many questions about what their wishes are for their son if this fluid keeps accumulating. Renee and her husband know that what is God's will will be, and they want Kole to be comfortable and in the most personal environment possible, and if their choices lie between the PICU and the room he is in now, they would prefer to stay put. They are able to snuggle with him, move him, rock him, enjoy every moment with him. While it was comforting for them to be home, it is more comforting for them to be surrounded by a wonderful medical team who has the resources at hand to keep Kole pain-free and to reassure Renee and her husband with their guidance and knowledge. I spent time with them this evening, and I can tell you, Kole is comfortable knowing that mommy and daddy are right by his side. We all know that Jesus is watching over him, and I saw with my own eyes that Kolebear knows he is too, more than once he had his little hands folded in prayer.
While you all continue to pray for their strength and Kole's comfort, please pray for WET DIAPERS tonight!!! We have seen the strength in this little boy, we believe in miracles, and we know that nothing in this world is stronger than faith. We do not know God's plan, but we know that it is not in God's will for Kole to suffer, it is not in God's will for Kole to be sick. We will not lose hope, we will only allow our faith to grow stronger. It is in God's hands, that is the one thing we are sure of. Please, in Jesus's name, pray that this family wakes up to a brighter tomorrow. On their behalf (and my own), God bless you all."

January 8, 2009

"Managed to step away for a minute to update on the PEEPEE!!! that we found in Kole's diaper this morning! Turns out it weighed-in pretty heavy, and while Kole is not out of the woods yet (his urine was iced tea colored), this means that his kidneys are still functioning somewhat, even if they've slowed down greatly. The other blessed news that I have to share is that the fluid accumulating in Kole's right lung (the side where the tumor is located) seems to have cleared up a bit. His blood saturation is up a few notches today, which means more oxygen is making it into his bloodstream. The fear yesterday, after hearing more fluid in his right lung, was that he had two separate issues - the fluid below the diaphragm (abdomen) and the fluid above the diaphragm (lungs). The original hope was that draining the fluid in the abdomen would cause the fluid in the lungs to dissipate, and yesterday it didn't seem so, but today it seems as though it has helped! Praise the Lord for He hears our prayers!
We even had a small bowel movement (it's been days....) and a SECOND PEEPEE DIAPER!
Thanks to all for your support and prayers and messages. As I looked through the message board, I was brought to tears. Your words are so moving and mean so much to me.
I don't know how frequently I will be able to update from here on out, as Kole's care becomes more critical. Please know that we are encouraging those who would like to, to come and see Kole. Just be aware that he isn't himself, there are a lot of tubes, and he only has brief moments of lucidity through his medication.
Know also that we stand in God's glory and comfort, and most are surprised to see how "well" we are hanging on, but the truth is, we have found such serenity in our closeness with God and our faith that we know whatever the outcome, everything will be okay. Kole is doing okay right now, vitals remain stable, so we can't complain. We can only enjoy every second. You are right, I have amazing friends and family couldn't do it without every single one of them. They will be helping me to update in the future, and of course, I will do what I can as well. Things are trying for us at times, and we do have our moments of unspeakable sadness and grief, and for this reason I may find it hard to bring myself to my usual routine. God bless everyone everywhere all the time. And much Peace and Refuge under His wings."

January 11, 2009

"Today is a blessed day, for Kole has been freed of his pain. At 11:50 this morning, our precious Kole recieved his angel wings. It was a moment of comfort, he rested comfortably in his mommy's arms...Daddy watched over him. He peacefully took his last breath here on earth, and as loved ones watched over him he flew away with the Lord. No more suffering, no more tubes, no more hospital beds, hospital walls, doctors, nurses, tests, or medication. Kole has fought his fight and he has won, for now he is dancing with the angels that have been waiting for him.
Mommy and daddy are spending their last few moments with Kole at this time while I update, when the time is right you will hear from then. Kole loved balloons, so in lieu of flowers, please send balloons. Balloons of all kinds, elmo, Thomas, all the things that made Kole smile. Please consider donations to the Koles guardianship account at Commerce Bank OR the Four Diamonds Fund in which helps pediatric cancer patients.
While we all grieve the loss of such a special young man, please remember that this is a time of joy. Let us celebrate his life and continue to pray for the strength and comfort of Renee and her husband, the rest of Kole's army and those who have loved him all along the way. God Bless ALL of you for being so faithful and supportive along the way.
Much love and friendship to all,
Kole's army"

While my post is later than usual today and the drawing photo not the best quality - I felt it necessary to make sure I shared the last few carepages updates before the days end.  However, when I initially thought and even hoped to have Koles drawing finished by today, the universe had a different plan.  One I agree with wholeheartedly.  There is still work to be completed on Koles drawing and he lives on.  He lives on in the heart of his mother and family.  He lives on as we read and send love, peace and prayers to his mother Renee and his family.  He is NOT forgotten.  A mother can never forget her child.  They will always think of them, wonder what they would be like today, miss them on birthdays, holidays and every day.  So I find it VERY fitting that I am not finished with the drawing, because Kole lives on.  And he will always be with us.

I worked mostly on darkening the crib rails, detailing more of the basket, adding the checked pattern to his bedding and adding shadows.  Nearly finished, not long to go.  Then we will share the story of this photo his mother lovingly chose to have drawn. 

11.02.06 - 01.11.09
Rest in Peace sweet, spunky boy
You are loved, you are missed

The beginning of Koles journey is here on Day 324

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