************Happy 50th Anniversary Dad & Mom************

*8:30 a.m. Bennett’s ANC is 697 from 270. WBC are 1.7 from 1.0 and neutrophils are 41 from 27. It’s going to be hard the next few days to really know what his ANC is because the neupogen shots is boosting this up. This is what we want but it will increase fast and than when you stop it, it will dramatically decline giving him his true ANC.

He couldn’t sleep again last night, not sure if it’s all the medicines or what. He was getting tired when we were watching CSI. He wanted some ativan and it knocked him out and he is still asleep this morning.

*3:00 p.m. Bennett woke up around noon. He had a sore throat when he woke up, it’s better now. His pain lying down is an 8 and when he sits up it’s the same. He said he felt like someone hit him with a hammer over the head. Dr. is going to keep him on the same amount of pain med. Bennett is pushing the pain pump 2 or 3 times an hour unless he is asleep. She first wanted to decrease it but because he is still in the same amount of pain, they are going to keep the pain med the same today.

Dr. did stop the zofran since he hasn’t been nauseated in 1 1/2 days. Dr. is going to give him an iv dose of caffeine only once a day during the day, she is hoping that will help with the headache. He ate pancakes and cereal which he really likes. Brittani and Gavin stopped by to see us. Britt is doing so well, it’s amazing!

He took a sponge bath and washed his hair. Sid has helped him the last two days when he was here and they worked out a system so Bennett didn’t even have to get out of bed. He says even though his head bothers him, it feels better to be somewhat clean.

*7:00 p.m. Bennett is feeling better. Some of it may be the caffeine they gave him. Dr. decided to give 500 mg caffeine at 9:00 a.m. and 3:00 p.m. He says his pain is at a 7. He pushes his pain button quite a bit but he has the head of the bed sitting up which bothers him a little more. He is getting sore and tired of laying flat. He spent a few minutes making cars out of lego. The Dr. thinks his headache is still both headaches from the sinusitis and the spinal tap. We are going to watch T.V. together tonight probably some CSI DVD’s.

We appreciate God’s love and support that keeps us going each day. Because of our faith in him, we know he will get Bennett through this additional trial in his long journey. Thank you for being a part of it with your love, support, and prayers. May God bless you with all your life’s trials and journey’s. Look to him to give you strength and hope.

*10:00 a.m. Bennett’s ANC is 270 from 324. His WBC is 1.0 from 0.9 and neutrophils are 27 from 36. I expected his ANC would keep dropping. Once it starts he has a history of bottoming out before it starts back up. Dr.’s expect this is from the sinusitis problems. Dr.’s are going to start him on neuopegen by iv. This is good news. This is the drug that increases your WBC therefore will increase his ANC. Dr. has always been hesitant to give him this because of being on study plus wants to see what his bone marrow will do. Dr.’s plan is to give him the neuopegen for about 3 days. His hemoglobin is 8.1 from 8.2 and platelets are 117 from 101.

Bennett did not have a very good night. He couldn’t sleep and rest from all the “beeps” from his pumps from all the meds that he is on. We even went to bed early at 10 but he was woke up and couldn’t get back to sleep. He asked for ativan at midnight and it put him right to sleep. He can sleep through almost anything when he has had ativan. He is still asleep now so I am not sure how his pain is today.

*3:00 p.m. Bennett’s gradually doing better. His pain is a 6. It hurts worse when he stands up. Dr. decreased his continuous drip of dilaudid just a little since he was feeling some better. He can still push for more if needed. His temp has still been low grade around 99.0 to 99.5.

He ate a pancake and cereal at noon. Sid and Hamilton got here around 12:30. Hamilton took me to lunch to Applebee’s in walking distance while Sid stayed with Bennett. Bennett watched a movie and has stayed awake since around 11:30. Dr. started another constipation medicine called myrlax besides the other two.
He has been having trouble hearing but the ringing in his ears is gone.

*10:00 p.m. Bennett was given GCSF (neuopegen) by iv. These are the shots to increase your WBC but can also be given by iv. We expect his WBC to be higher but it will give an artifical reading for the next few days. He was more relaxed today, I believe the caffeine made him edgy yesterday. Dr.’s have stopped the caffeine all together now. His head still hurts some and more when he stands up. He is sitting up more eating and watching T.V.

We’re are so thankful things are progressing and gradually looking better. Thank you for everyone’s prayers.

*9:00 a.m. Bennett’s ANC is 324 from 464. His WBC was 0.9 still critical with 36 neutrophils. Hemoglobin is 8.3 from 7.9 so that’s good. Platelets are 101 from 107. Bennett did not sleep after midnight very well. We believe the caffeine woke him up and kept him awake plus he slept all day. His temp is normal. He hasn’t been upset to his stomach.

Bennett’s pain is a little better. While he is laying down, it’s a 7. When he sits up to take medicine or go to the restroom, it’s a 10. He feels more comfortable, we believe the continuous ativan is helping with the anxiety and discomfort.

He hasn’t used the humidifier breathing mask anymore, it bothers him too much and causes more aggravation with pain.

Sid just got here. Hamilton is at a friends house. We decided since Bennett feels so bad that it’s too much to have him here.

Pain management Dr. came in and said since things are improving a little that they would keep up with the same pain meds, the extra fluids and caffeine and bed rest for the pain.

He is itching quite a bit but they are giving him a couple antibiotics to help with that. He doesn’t have any ringing in his ears anymore.

*3:00 p.m. Bennett’s pain has been around an 8. Dr.’s have stopped the ativan and will only give as needed because he was getting way to loopy. We would talk to him and than he would doze off and was too glassy eyed. It does really relax him and makes him comfortable but we have decided to only give if his pain increases.

He is still on the dilaudid pain med drip continuously and still pushes when needed which is a couple times an hour when he is awake.

He has complained about his neck and back hurting probably because of being in bed so much, they have put egg crates on his bed to help with comfort. His temp has been low grade around 99.3.

He has started itching more so they are going to give him atarak med every 6 hours, the nu bain and benedryl wasn’t helping with the itching. He did sit up for a minute and took a couple bites of pizza for lunch. He hasn’t been nauseated.

His pain started getting worse because of noise and light from our room mate so a room opened up and we have moved rooms.

*9:00 p.m. Bennett’s pain has been a 7. He is sitting up a little more. When he does sit up, he says his pain is an 8 at first and than gets worse until he lays back down. He ate some cereal as a snack and a had few bites of pizza for dinner plus a small chocolate shake. He stayed awake most of the day. He watched the cardinal/cub game with Sid and than watched CSI with me tonight.

He is pretty demanding. He keeps us all hopping! He has many pains and wants everything to be right. He is getting several medications and it seems they are causing him to act different and maybe a little “drunk” acting. Hopefully we do have his pain meds figured out, I would rather him be a little loopy to control his pain.

They have started him on pepcid because he has heartburn and he was aggravated about that new pain today. He asked for no caffeine tonight at midnight so he can sleep. The Dr. agreed unless his pain is worse tonight. His temp has been 99.7.

To help me keep track, here are the medicines he is taking now.
ocean nose spray, humidfier breathing mask, pepcid, senna, colace, nu bain, atarak, flovent inhaler, neurontin, dilaudid pain med, caffeine, meromenum, benadryl, vancomycin, extra fluids.

He is using the humidifier breathing mask and he said he would keep it on till midnight. His nose hasn’t really bothered him. His face is a little red around his eyes but no bruising or swelling from the surgery.

We’re thankful he is gradually feeling better. We pray the pain continues to get better and we can gradually take him off the pain medicines. We pray his ANC starts climbing up since it’s very low. It’s scary that he could get another infection.

Thank you for your prayers, comments, and concern. May God bless Bennett and all the 9west kids, and the families of all the 9west angels.

*7:30 a.m. Bennett slept from about 1:30 a.m. He wore his air mask which we hope this helps keep his nose moist. He has been sick to his stomach this morning due to more drainage from the laying down thru the night. He was given zofran.

His temp was normal. He hears a beeping noise in his ear. He is still in alot of pain. He can’t sit or stand up for just a minute because it hurts so bad. Dr. increased the amount of dilurdid pain medicine to equal out with the same dosage of morphine he was getting. At first, they wanted to start this new pain med out slow since he has never had it.

He is having trouble urinating and Dr. says this can be from the anesthesia. It is aggravating to Bennett because he doesn’t feel like even going and he is not getting a quick relief.

*9:45 a.m. Bennett’s ANC is 464 from 490. His WBC went down to .8 from 1.0 now in critical range. His neutrophils did go up to 58 from 49. Hemoglobin is 7.9 from 8.2. He is getting close to transfusion level which they usually tranfuse blood from 7.0 to 8.0. Platelets are 107 from 109. We are thankful for not another big drop and pray they stay stable.

He woke up for a minute to take some constipation medicine of senna and colace. He was able to finally urinate. He still feels horrible but he at least is letting me rub his back. Frequently he has felt so bad that he doesn’t even want touched.

*1:30 p.m. Bennett has been sleeping all day. Dr. stopped his continuous pain med of dilaudid because his oxygen level was too low and his breathing was too relaxed. He can push the pain med 4 times every hour for pain if needed but will not receive a continuous drip. He has been sleeping for the last couple hours so he isn’t in any pain. A pain specialist Dr. is supposed to be coming in to discuss his pain and any other options.

He has been scratching quite a bit which itching is a side effect of the pain medicine. They have given him new ban to help. He was sick too his stomach again and is getting zofran. ENT says this is a side effect from the surgery. His temp is normal.

Dr.’s started him on a saline spray for his nose to help keep his airways moist. He hasn’t had much bleeding of the nose which is good.

*5:00 p.m. Nothing much has changed. Bennett is still in pain, about an 8 when he is lying down but when he gets up it’s worse. We are waiting to hear from the pain management Dr. to see if he has a different plan.

Dr’s are going to start up the continuous dilaudid but at a lower dose and he will still be able to push for more if needed. They are also going to give him ativan every 6 hours for pain and comfort.

He hasn’t felt like eating or watching T.V. He sleeps mostly but were thankful that he is resting. He is still getting sick to his stomach especially when he sits up. This along with the ringing in his ear is probably from the surgery and should get better soon. Dr.’s are going to give him zofran around the clock every 6 hours now. He is still getting the iv antibiotics meropenum and vancomycin ever 8 hours still. And benedryl because of being allergic to the vanc.

*9:30 p.m. Bennett is sleeping alot. Only waking up every few hours. He did say his pain is an 8 but he is comfortable. The ativan is really relaxing him. It’s good to see him in not so much pain. When he does wake up, he wants it to be as quite as possible and as dark as possible. Light and noise makes the pain worse. This is a little hard to control with a room mate.

The pain management Dr. came in, we gave the history and he indicated he could have two headaches together. One from the spinal tap on Tuesday (possible leakage) and from the sinusitis problem and the sinusitis surgery. He is trying three new things. 1. complete bed rest. keep bed level and not to get up. He even tried to urinate laying down and that didn’t work. 2. started him on caffeine by iv every 8 hours. 3. increasing another bag of fluids, more fluids will help open your veins causing more blood to flow through which relieves headaches. He was okay with the pain medicines. This Dr. will be checking in daily as well.

Thank you for your continued prayers. May God bless Bennett and all of the kids on the floor.

*7:00 a.m. There is a possibility Bennett will not have the surgery today. His Anc is only 490 from 1,064. Now, he is neutropenia. I was afraid of this. An ANC below 500 is a severe chance of infection. This concerns me because he is not even supposed to go to the dentist with an ANC below 500. Hemoglobin is 8.2 from 8.9 and platelets 109 from 127.

The ENT and oncology Dr.’s are going to discuss together of what’s best for Bennett. The surgery isn’t until after 12:30 so they have time. My suggestion was to possibly do more of his sinuses why they are in there since his counts are dropping and he is in so much pain. We might just have one shot if it’s safe to go ahead with the surgery today. Keep praying!

Bennett was still in pain last night. At 1:30 he still couldn’t sleep so he asked for some ativan and he finally went to sleep . His temp has been normal.

*10:15 a.m. Bennett’s surgery is on. Just heard from nurse that they are trying for 11:00 or 11:30 but he is an add on so no time is definite.

*11:00 a.m. Nurse took a PT (prothrombin time) and PTT (partial thromboplastin time) blood test. This is evaluating to make sure Bennett has the ability for his blood to clot before going into surgery. we are waiting on these results. I haven’t spoke to any Dr.’s to confirm times and/or the extent of the sinus surgery.

Bennett has woke up once saying he had an awful taste and film in his mouth. Nurse let him swish and spit. He said his head really hurt. He was able to go back to sleep. He’s resting.

*12:15 p.m. The PT and PTT blood tests came back in normal range. Good! Now, waiting to be called to surgery.

*1:30 p.m. Bennett is going down for surgery. God bless Bennett!

*3:34 p.m. The nurse just said another 40 minutes, they are starting on right side now. Bennett is doing good.

*4:09 p.m. Bennett is in recovery; the surgery went well; not too much bleeding; and no polyps.

*6:50 p.m. Bennett has been in his room for a couple hours . Amen! Praise the Lord! He stayed in recovery for about 45 minutes and the surgery took two hours. The ENT Dr. felt like she cleared all that she needed to which was the minimal surgery which was the maxillary and ethmoid sinuses. The Dr. indicated that he had some puss and the lining was pretty thick.

They want him using a face mask to breathe in moist air to help with the healing of his nose. He hates it because he doesn’t feel good. He is keeping it on his chest so at least he is getting some of the air.

He is still in a lot of pain in his head. He says it’s a 15 on a scale of 1 to 10. This pain unfortunately may last a few more days. The Dr.’s are keeping a close eye on him and are increasing the morphine as needed.

We are thankful this part is behind us and pray for his healing. Thank you for all your prayers today, God was overwhelmed today with all the Bennett prayer warriors!

*10:30 p.m. Bennett’s temp was 100.8 at 8:00, they gave him tylenol and took blood cultures again. He was sick too his stomach, had assuming drainage, blood from surgery that didn’t settle well on his stomach. He got zofran to help with that. He hasn’t ate anything all day and has drank a little tonight.

His pain didn’t seem to get any better this evening. Dr. decided to switch him from morphine to dilaudid (hydromorphone). He still has a pump so he is receiving it constantly and can push. He is asleep now and hopefully will be able to the rest of the night. We pray his counts go up tomorrow.

Thank you for your prayers and positive thoughts. God will see us through this giving us strength and hope!

*11:00 a.m. Bennett’s fever last night went down to 100.4 around 1:00 a.m. He doesn’t have a fever this morning. They took two CBC’s yesterday, one in the clinic and another about 10:00 p.m. His ANC went from 1,206 to 1,064, Hemoglobin from 9.8 to 8.9 and platelets 135 to 127. It’s concerning that they dropped so much in just a day and from the same lab. They will probably do another CBC tonight.

He is sleeping this morning. He walk up for a minute to do his nasal sprays. We asked him about his pain, he said he was okay just wanted to sleep. We are waiting to hear from the Dr.’s.

*3:00 p.m. Bennett had another temp at noon of 100.4, it’s back down now after receiving tylenol. He woke up for the day couple hours ago, he ate a few pieces of pizza. He had a bad headache, more his head than ear. Nurse gave him some morphine, that didn’t help much yet so he is trying an ice pack and drinking caffeine. His stomach started bothering him so received zofran and is trying to go back to sleep.

They checked his IGG (immunoglobulin) level and it’s low. These are antibodies in your immune system that fights off bacteria, virus, etc. He was given IVIG (infusion of immune globulin) which took 2 hours and they checked his vitals signs frequently. It went well, hoping these extra antibodies will help fight off his sinusitis. His levels were; IGG 433 normal range 700 to 1,450, IGA was 27.6; normal range 70 to 370 and IGM level was 6.9 and expected range is 30 to 210.

We received preliminary report back from the spinal tap that everything was negative. Amen! They will keep it in the lab and see if it grows anything in couple days. The same for the blood culture they took last night to see if it grows any bacteria.

The stealth guided sinus CT scan that he had last night showed the same thing that he has extensive sinus infection. This is a computerized scan of the sinus that will be used if he has to have sinus surgery. We hope to hear from the ENT Dr.’s yet today.

*9:00 p.m. Bennett is still in quite a bit of pain. They put him on a morphine drip at 6:00 so he receives continuous morphine. And than he can push the button but only three times an hour. He still has pain even with this so they gave him a bolus of morphine. His whole head hurts now not just his ear. It’s worse when he sits or stands up.

They checked his blood level of the antibiotic vancomycin and it was at 11 and safe range is 5 to 15 so he can still have this every 8 hours. They check the level to make sure his body is clearing it and there is not too much in his body. His temp at 5:30 was 100 and he took more tylenol. Temp is normal now.

Dr.’s have decided to go ahead with a “mini” sinus surgery tomorrow. The mini means that he will have his four sinuses cleared and suctioned out. The surgery is called functional endoscopic sinus surgery with his maxillary and ethmoid sinuses. These are the sinuses in his cheeks and nose. They want to try to clear these first and see if it helps drain the other sinuses in his head and relieves the pain. He is an add on so we don’t know what time. He will be sedated so nothing to eat after midnight.

Dr. says that he still could have pain and headaches for a few days after surgery. If it doesn’t get any better after that, than they may decide to clear all of his sinuses in his head. I think you have about 11 sinuses. They will do this as a last resort because the other sinuses are near his eyes and brain which is a more intense surgery.

*3:00 p.m. Bennett has been admitted to the hospital. His Dr. wants to start a stronger antibiotic by iv and also to give him morphine for the pain. We were ready for this, the antibiotic and pain meds at home haven’t been helping much.

Bennett had a horrible night, didn’t sleep. He said his pain was at 13 between 1 and 10. He asked for some more pain medicine at 2 a.m. and it didn’t help.

We saw his Dr. by 8:45 a.m. and she gave him some morphine by iv first thing. He felt so bad that all he wanted was the lights off and to lay down. He also asked for zofran because his stomach was bothering him and he got sick to his stomach when we left home.

He had the full head CT scan this morning. We are waiting on results. His Dr. wants the ENT (ear, nose throat) specialist to review the scans too. Last weeks Ct scan was just of his sinuses. She hopes to tell more with the full head scan and is also looking for inflammation.

His Dr. decided to go ahead with the spinal tap but did not do the blood patch. She is double checking again for virus or bacteria plus checking all cells in his spinal fluid. This came back negative last week but she wants to check again.

*5:00 p.m. ENT (ear, nose, throat) Dr.’s came in and put a camera up Bennett’s nose and saw mucus. This is good, means he has some drainage. He does not have an ear infection. The ear and head pain is caused from the sinuses. The Dr. showed me today’s scans and there is some blockage and inflammation but also there is some air ways. This is good news too.

The preliminary plan is to try two iv antibiotics meropenum and vancomycin to see if this helps the inflammation. He has had both of these last year when we didn’t know what was causing his high fevers. He gets “red man” with the vancomycin which means he is allergic to it so it runs over 2 hours and he has to have benadryl. Bennett sleeps alot with benadryl and he was ready to get some much needed rest.

If there is no change in a couple days than ENT will look into doing sinus surgery. ENT is hoping since there is some air ways and mucus that maybe the medications can help move it and relieve the pain. They have hope this will work and want to try medication before surgery.

They have scheduled another ct scan scheduled either tonight or tomorrow which is a stealth guided sinus CT scan. It’s more specific and will help if he has to have surgery.

He had more morphine when we got to his room on 9west around 2:00. This took his pain from a 10 to a 7. He is sleeping right now.

*10:45 p.m. Bennett went down to radiology and had the stealth guided sinus CT scan this evening. He finally ate the first time today; some cereal. He had some more morphine around 8:30 because of the pain. It’s still bothering him so they are going to give him some more, he can have it every 2 hours if needed. He says it doesn’t take the pain completely away in his ear.

He had a 101.5 fever at 9:45. They took blood cultures checking for infection. It’s possible the fever is from the sinusitis. He has taken Tylenol for the fever. He has to do two nasal sprays couple times a day to keep his sinuses moist. He is getting a bolus of fluids because nurse thinks he can be getting dehydrated because of dark urine.

Thank you for everyone’s prayers and comments on this website. We appreciate it. It has been pretty stressful for us the last few days. We are relieved to be in the hospital where they can keep an eye on him and help relieve some of the pain. We keep praying that there are no surprises and all of this is related to his sinusitis problem. Thanks again, God Bless!

Bennett did not go to school today; he didn’t feel like it. He still has a bad headache and earache. His throat is sore and his stomach is bothering him more. He has been taking his antibiotic, tylenol 3 with codine, Oxycontin, ear drops, ibuprofen, and pepto.

He says, the pain in his ear is unbearable once a day and the other times it just really hurts. I talked to his nurse today and his Dr. wants to see him tomorrow. She will decide at his Dr. visit, if she feels like the headache could be from his spinal tap last week. He has gotten alot worse since his spinal tap on Tuesday. He possibly could have leakage and they would do a blood patch (taking spinal fluid out and replacing it with his blood) causing the pressure to stop and relieve the headache. She wanted him to take 1 1/2 caffeine tablets today because caffeine will help a spinal tap headache. This made him really jittery and so far hasn’t helped the headache. His Dr. will also decide about doing a full head CT scan tomorrow.

A friend told us today about how her massage therapist helps with her sinus headaches and ear problems. We were able to get Bennett in today to see the massage therapist. We have a new one in Benton. She massaged his head, neck, shoulders, and his sinuses. He felt better after wards and he could feel his sinuses draining. Two hours later, he felt worse again but still felt drainage. She told him to put ice packs on his cheek bones, at first he said it froze his face but he has tried it again tonight because he did think the ice helped.

We have to leave home around 6:00. We have a clinic appt at 8:30 to see his Dr. and if she decides to go ahead, his CT scan is at 9:50 and the spinal tap at 12:30. We hope to go back and see the Dr. and hear scan results, praying for nothing more severe.

Even though he isn’t eating much, he’s not looking forward to not being able to eat until the afternoon because of having to be sedated for the spinal tap.

We pray that God gives the Dr. wisdom, and heals Bennett soon of his terrible pain in his head/ears. This has been the worst he has felt in a very long time.

Bennett is feeling worse unfortunately. His ear really hurts and he frequently has a headache. He is taking pain medicine and ear drops as often as he can take it.

He did get up this morning to find the Easter eggs that the Easter bunny left but went back to bed. He didn’t feel like going to church. Loud noises and voices really bother him. He did go with us to my parents for dinner with the whole family for a couple hours. He managed to find some more eggs and fly a kite for a few minutes. He came home and went to bed.

We tried using a blow dryer on his ear, he said it helped maybe just a little. We bought the neti pot that is supposed to help with sinus drainage but after reading it’s not supposed to be used with a ear ache or blocked sinuses. We are trying any home remedy to relieve his pain.

I will call his Dr. tomorrow and let her know that he isn’t any better, actually he probably is worse. We are fearing that this antibiotic might not help so your prayers are appreciated.

Hope everyone had a beautiful Easter! Praying you took some time out of the day to Praise God for all his blessings plus thanking him for sending his son that died on the cross to save us from our sins so we may have everlasting life in Heaven! God Bless!

[caption id="attachment_2127" align="alignnone" width="300" caption="Isaiah trying to keep warm today."][/caption]

Bennett flying a kite, sure was windy!

“He is not here; he has risen, just as he said. Come and see the place where he lay. Then go quickly and tell his disciples: He has risen from the dead and is going ahead of you into Galilee. There you will see him. Now I have told you.” Matthew 28: 6-7