Our arrival at Children's Hospital in Cincinnati started off bad. There was no bed immediately available so we were put off into a small room for a few hours. The Transplant Coordinator, who had called and confirmed our arrival time the day before, was not present when we arrived as she said she would. This kept her at 100% late or no show for meetings with us. Discussions with other parents have resulted in my not changing my attitude about an apparent lack of care. This is unsatisfactory. After moving into the room, he was visited by many health care people. The doctors went over the procedure again and cleared up some areas where we had questions.
We thought we would be able to get out of the hospital and move to a hotel for a few days but this would not be possible. On this first day Tim was started on hydration fluids which will run for 24 hours.
Again, more testing. More visits. Tim finally starts on chemo. He hooked to three VI pumps pushing nine bags of "stuff." The major drug is being pushed for three days continuous. He feel great and is spending a lot of time on the computer.
The chemo continues. VP16 and BNCU is running 24 hours a day for three days. Tim is still is good spirits and is still eating. His blood counts have not dropped yet. Father Mike, the Catholic chaplain stops by to introduce himself. Tim is still interested in the computer and plays his online game.
Tim is still eating OK. He doesn't mind when the Easter Bunny stops by for a quick visit. Great for the other kids in the pod.
Tim is suppose to be taken off the IV pumps and given a pass. As it works out, he doesn't get off until 3:30pm. He has to go back on at 6pm so the trip home is out. Mom comes down to visit. The Easter Bunny must have come during the night as Tim has a basket containing a small basketball and net. Now to put it up in the room.
Tim had a bad day. He was sick for the first time. The nurse gave him some benydril which made him sleepy. He really doesn't like the way it make him feel. After some discussion, it was decided to cut the dose in half the next time. He tried to walk it off but it made him sleepy throughout the night.
Tim started the day feeling great. He eat his whole breakfast, even though it was hospital food. He felt up to getting dressed and even checked his email. He started to feel bad about 1pm. After I returned from eating he got sick again. He is doing better now (6pm). I guess I should start to worry about myself as I have put on some weight (hospital food?). I am even trying to walk about 2 miles after lunch. I am not very activity here as I am either reading or input passenger roster or schedules for various railroads.
Tim eat some of his breakfast. The dry cereal when down and stayed down. His mom came down for the day. This was our anniversary and I took my wife out to lunch, in the hospital lunch room! Tim felt like something from McDonald's so I walked down the street and got him a hamburger and small fries. He managed to keep that down for a couple of hours before getting sick. He also got sick later in the day. This was his last day on chemo. The nurse want him to take some more anti nausea medication but Tim doesn't like the way it makes him feel.
Today was a day of rest. Tim doesn't have any chemo treatment as he gets ready for the transplant tomorrow. He tries to eat a little but it doesn't stay down. Because he like to know what is going on, he refuses the offer of anti-nausea medication. The doctors note the start of mouth sores. They decide to start IV feeding in the evening. As part of the workup, they have determined that he needs 1500 calories per day.
He is disconnected from the IV line for a few hours late in the day so he can move about the room. He is now getting two different liquid foods which will provide him the required nutrition.
I am concerned over a slight weight gain by so I take a two mile walk after lunch.
During the early morning, Tim was connected to the EKG monitor in the room. It same strange, but I can sleep through the alarms on the two big IV pumps. The little one has a unique sound which wakes me up. I normally sleep through the 4am blood draw and vital check. Tim feels good enough to check his email this morning.
At 11am he started to receive his stem cells. He has three bags and as I write this they are dripping into him. Kelly and Beth are running the line with assistance from a technician from Hoxworth Blood Center. The doctors were just through and said that he remains on track. The nurse consider this his second birthday. The procedure results in a unique smell in the room. The stem cells are placed in a hydrogen sulfide as a preservative after they were collected from Tim in November. After the cell were processed, they were placed in a liquid nitrogen bath. The bags are thawed outside the room and immediately infused. The smell will be with us for three days or so.
11:45am, the three bags are infused. The total stems cells are 16.95x 10-6. His white blood count has dropped to 0 so now the rebuilding starts.
The room is about 16 feet square with a window looking out on a court yard. One whole wall, the one on the corridor, is all glass, so we keep the curtain drawn. The staff is really great. The nurses like Tim and they all want to work with him. Jenny is his primary nurse during the day and can't do enough.
Tim is still on IV feeding. He doesn't want to chance eating yet.
Tim's total blood count is now 0. His white blood count is 0 while his platelets are still high but dropping. They should be down to 0 sometime in the next day of so. Nothing interesting on TV, so Tim asks me to run out and pick up a few videos. We watch Air Force One.
Mom comes for the day. Tim is feeling pretty good, in fact he is even interested in eating. Jenny gets him some chicken noodle soup, apple sauce, and pudding. Because of his 0 white blood count, he has to eat certain foods, and that has to be opened just before he eats it.
The smell is pretty well gone. Tim's short hair starts to fall out again. We watch another movie after mom leaves.
Tim's platelets are near 20,000. Once they fall below that level, he will receive a platelet transfusion.
Tim's platelets are now down to 17,000. He received a transfusion this morning. He has been sleeping more and is some low level pain which he handles by taking pain pills, slightly stronger than over the counter pain pills you can buy. He is offered stronger but does want them.
The chemo kills all fast growing cells in the body. Most people think about the hair and white blood cells, but the mouth and intestines are also fast growing cells. Tim is having some problems with his mouth.
Because he isn't eating, he has lost 10 pounds. Luckily, this is the extra weight he put on before starting the procedure. The doctors continue the IV feeding.
I was awoken during the night by more than usual traffic through the room. I was informed that Tim had developed a temperature of 102.4 and they was doing cultures to try and determine the cause.
As I was scheduled to be in work today, I left at 6am to get home, change eat breakfast and get to the office by 8am. My wife called me around noon and said she tried to talk with Tim but he didn't sound too good. I finished up the task I was working on, went home, changed and pressed on back to Cincinnati.
When I got to the hospital, Tim was doing exercises for PT. He looked OK and his temperature seem OK. The Rebecca came in and gave me the run down. Tim had a bad day. After I left, his temperature started to come down. After an hour or so, it started to climb and got over 104.8, the highest the thermometer read. The doctors were there and they gave him several different medicines and they controlled the temperature. They also determined he was dehydrated and gave him a liter of fluids.
He is resting now and appears to be doing OK. The worst day and I was not here with him.
Tim had a bad night. He became sick early in the morning with some level of pain. He is determined not to take anymore medicines than is necessary. He had a temperature and then the shakes. This lasted for about 20 minutes. Beth, his night nurse works to keep him comfortable.
He has another round as 8am. The doctors have determined that he has an intestinal virus and are working to correct the problem. He has another round of the shakes while the doctors are here. Tim finally agrees to higher powered pain medicines. The "pain doctors" are brought in and provide immediate relief and then install a Personnel Pain device which permits Tim is select when he needs to control the pain. He pushes a button which releases a small dose of morphine. He is currently on two antibacteria medicines along with the IV feeding running through six IV pumps.
Tim had a good day. He must be getting better as he is starting to get testy. Mom came down for the day expecting to see Tim looking bad. However, he looks the same. He has had a good night sleep, or about as well as came be expected in a hospital. During the blood draw at 4am, they note that his platelets are below 20,000 so they start a transfusion at 5am. Platelets are transfused by using gravity and not using the IV pumps.
Because Tim still isn't up to speed, he fore goes the PT again. He is suppose to receive both leg and arm exercises while he is in the hospital. The IV feeding must be doing some good as he has actually put on some weight. Tim manages to keep down the anti-viral medication tonight by taking it over and hour.
Dr Morse is checking the air vents in the rooms. This floor has a HEPA HVAC system but the filters haven't been cleaned recently. Three hours later maintenance shows up to clean the filter in Tim's room.
It has been a week since Tim's transplant. His blood counts are still although the doctors expect to see his counts start to come up this weekend.
He has been having a running battle with fever. His temperature climbs, they give him Tylenol and it goes back down. This is what he had to put up with during the earlier chemo treatments in Dayton. These should start to go away as his blood count climbs.
Because his platelets are below 20,000 again, he receives another transfusion this morning. The line is not as long as the other running into his central line so I have to carry the bag when he move around. The first time he went to the bathroom his blood ran half way down the line because I couldn't keep the bag above his head. We didn't have any problems after this. Because his hemoglobin is down, he also received two units of whole blood this afternoon.
The old Tim is back. He is fighting everything but eventually decides he better do what the nurses ask him to do. When the pain team stops by this morning, Tim indicates a little discomfort so they bump up the dose by a very small amount. This helps.
He receives a package in the mail from his uncle and aunt and this cheers him up this morning.
Tim has a fair day. Nikki, his normal night nurse, works 12 hour shift during the day. She continues to push him to do both the mouth care and take the GI medication for the robovirus. She tries some different tacks and he final relents and does what is asked of him. Nikki is our Beavercreek connection as she grew up about five miles from where we live. Fred, one of the doctors, again explained to Tim why he has to take the medication. The doctor also tells me that Tim is doing great and may be doing the best of the patients who have been through this protocol.
Tim needs platelets again. His counts still are 0 but we are hoping to see the first numbers tomorrow.
Not a good night. I can normally sleep through the IV alarms if they don't run too long. Well this night on three occasions they ran about 15-20 minutes which woke both Tim and me up. I guess the nurses were busy.
Dr Morse and Fred (Dr Hung) come through this morning. They say that Tim's white blood count is 100. The recovery has now started.
Mom was down today. However, Tim is not much in a talking mood. He has his daily bout with the bucket and then feels OK. He is trying to keep up with the mouth care and GG for the GI virus.
If you are wondering what I'm doing to stay busy, I use Tim laptop computer to work on my WEB site. I brought my copy of the 1944 & 54 Passenger Equipment register and have added several railroads. I also have my 1964 Guide so I added some schedules from this. I also brought my 1976 Equipment Guide and have added info on some short lines. From my collection I brought a TP&W employees timetable and the S1/S2/RS-1 operator manual. I am currently retyping the entire EA operator manual because the font in this 1941 manual would not OCR.
I have also read seven books and I take a 2 mile walk after lunch if the weather is acceptable.
The material I am working on is suggested via email or it is a railroad I am interested in or a shortline that I can complete.
I still have about two weeks to go.
A red lettered day, Tim's counts are starting to climb. The ANC is now 60. The white blood count is still at 100. The goal is for an ANC of 2000 for three days and then we can bust out of here.
Even though his ANC is starting to climb, Tim is still depressed today. He wants to feel good! He has the shakes a couple of times and his temperature goes up and down. The doctors are concerned over the rash on arms and hands and call in the dermatologist to take a look. They don't think it is anything bad but give him cream to apply to these areas. Tim decides he doesn't need the cream but after the rash appears to spread he lets me apply it to the bad areas.
Tim uses the bucket three times during the day. He doesn't want the doctors to know so I take care of it for him.
One of the IV lines break at a bad joint. Tim happens to notice a pool of blood forming at the break and immediately clamps his central line and calls me. Two nurse immediately come in and change the line and he is back to normal. Another one of the little things that make each day different.
He is up to watching Merlin on TV and even a little of Letterman. Normal bedtime is around midnight for the both of us. I can normally sleep till 8am with the normal interruptions from the IV pump alarms throughout the night although I would much rather have Tim better and home and my getting up at 5:40.
Tim starts off with a bout with the bucket. I suggest that he tell the nurses so they can give him something and he agrees. He is given a half dose of Benadryl for the nausea and that appears to help.
He is now concerned over the rash which appears to have spread along his hands, arms, and legs.
The CBC (blood count) has not been posted yet so I don't know if the counts have continued their climb.
His blood count for today is ANC - 90 and white blood 300.
Tim drank a container of apple juice and kept it down. Another first. He has an interest in drinking 7Up.
Tim starts the day at 6am with the shakes. The nurse brings another blanket which helps.
Mom comes down and spends the day. She says Tim looks and sounds better than he has for the last two trips.
His ANC has climbed to 375 and the white blood cells are now at 500. The doctors are concerned about the rash which now covers a large part of his body. Doctor Morse seems to think it is a reaction to one of the anti biotic. They are going to change to something else. The dermatologist says very interesting several times and agrees with Dr Morse.
Tim has been able to keep apple juice down and his bucket bouts are less with each day. He actually makes it through the day without being sick. He asks for ginger ale which I pick up while I was out.
Dr. Morse seems to think that Tim will be able to go home in 7-10 days if he can get over the fevers.
Tim receives a phone call from his brother in Austin TX. Tim says he called while driving home from work. They talk for about 10 minutes and that make Tim feel better.
Overall it has been a great day. Tim downed three doses of IGG with apple juice plus another container of apple juice. He even work with both PT and OT for exercise with his arms and legs.
Tim has another bout of shakes at midnight. This lasts for 30 minutes. During these attacks, Tim says that he feels cold all over his body. His night nurse is Jenny who is doing a double shift. Tim decides to try and take Tylenol around 5:30am to see if this will stop the next attack. The shakes appear to hit every 6 hours. Jenny gives him his Tylenol at 5:30 but I hear Tim at 5:55. This bout run until 6:25, which is normal. Jenny says goodby as she is going on vacation and hopefully won't see Tim again.
Tim's counts fall today. This is to be expected and is normal. ANC - 185; WBC - 300; Platelets - 11,000. If you are interested, I can create a table with these numbers.
Tim's day nurses are Rebecca and Jenny.
Because the platelets are low, Tim receives another transfusion. The Tylenol and benadryl given before this carries him through the noon period with just a couple of minor cold flashes.
The doctors are still trying to figure out what is causing the rash that covers most of his body. It doesn't itch and it doesn't have bumps. They decide to change the antibiotics again. If this doesn't improve the rash, they will do a test on a skin sample tomorrow.
Overall this is not a great day. Tim has felt bad the entire day. It is with much difficult that physical and occupational therapy manage to get him to do anything. He makes it clear to the dermatologist that he doesn't want to be bothered today.
The pain team deletes the continual morphine and replaces it with a long lasting pill. He is still connected to morphine if he needs it.
Tim doesn't have any shakes at 6pm or midnight, good. The skin rash appears to be getting better. The deep red color on his hands is down to a light red.
Tim has Roger for his evening nurse and then Beth for the night nurse. Even though he is a handful at times, all of the nurse try and get him as their patient. Nikki was sad that she didn't have him last night.
Tim has a good night. He does have the shakes at 6am but they are very mild and he doesn't call me until they are about done.
He does have a bout with the bucket this morning. His platelets must be under 20,000 as he is going to get a transfusion. Tim's day nurse in Rebecca.
Lori says that his counts are up again but they have not been posted yet. Tim counts for today are - ANC 285; WBC 400; Platelets 19000.
Tim actually had a fair day. With his counts higher he feels better. His rotovirus appears to be gone so they want him to take the IGG for one more day. He does his exercise with both physical therapy (legs) and occupational therapy (arms). A new dermatologist stops by to look at Tim while he is a sleep and wakes him up. Once he determined her specialty, he tells her to leave and not come back, using words more colorful than that. I pass this on to the staff and indicate that they should not return, especially if Tim is feeling better.
The rash that covers most of his body is starting to fade after the change of medication.
I get a visit from the staff discharge person to go over the requirements once Tim gets home, again.
Tim's even nurse is Lori with student Amanda. The night nurse is Beth.
Tim has another bucket boutbut no shakes except for the minor one at 6am.
No shakes during the night or early morning. He is still getting sick but the benadryl seems to help. The pain doctor stops by this morning and asks Tim if he still needs the morphine and Tim says he is doing OK with pain pills so the doctor stops the self administered dose. A couple of hours later the pain returns and he requests the PCA be reconnected which it is.
Tim's day nurse is Rebecca. We discuss if Jenny has made it to Disney yet on her vacation.
Tim's counts are in: ANC - 800; WBC 1000; Platelets - 17000. Tim received another transfusion of platelets.
He is having a great day. The rash is fading fast and his hands are about cleared up. He drinks a half a can of "7Up" this afternoon. He has another can for tonight. He is currently (8pm) not connected to anything so may be he won't be going back on morphine tonight. He has a few hours tonight where he won't be connected to anything but he has to go back on IV feeding about 9pm.
The doctor says they might try something different tomorrow if his stomach still is having problem.
The night nurse is new to Tim and he isn't too happy. She waits for the morphine before she comes in to hook Tim up to the various medications. Before she comes in, Tim has a bout with the bucket. Neither Tim nor I are too happy about the delay and I believe this is the reason that he got sick.
It is interesting that I can sleep through some of the IV alarms but wake up immediately if Tim makes any sound indicating discomfort. I have to rub his back a little around 5am when he has some minor discomfort.
Tim likes to have me around. I don't have to do anything, but he like to see me. He needs support at various times on some days when he is feeling bad. He just want to feel better. At times he wonders if he will ever feel better. I tell him that I haven't any idea how he feels. It is hard trying to relate to how he feels. It is important that I be here for him when he needs the extra level of support.
Tim's counts are in: ANC - 539; WBC 700; Platelets - 10000.
Tim received another transfusion of platelets. Rebecca, Tim's day nurse, says that if his ANC stays above 500 for three days he can start to do more. Now I have to try and get him to start eating.
Tim actually has a pretty good day. Mom drove down for the day. The doctor will be trying something new for nausea starting tomorrow as Tim will start to eat real food. The doctor also wants Tim to walk around three times a day. If things continue to go this way we could be home on Friday!
Since there is nothing on TV tonight, I run out and get a movie. It was funny and gave us something to do for a couple of hours.
The resident thinks that Tim is retaining water as his weight is up. She want to give him lisics during the night. Tim is against this and tells the nurse he doesn't what to take this during the night. If he gets it, he has to go to the bathroom about every 10 minutes. This doesn't help when you are tried and want to sleep. The nurse go to bat for Tim and gets the resident to put it off till the morning.
Tim has a good night. The resident did order platelets, which they give, and didn't even wake Tim up. This morning Tim looks good. His rash has faded even more with no trace on his hands and arms. He starts on a new anti-nausea medication and drink a container of orange juice. He says he will try some cereal this afternoon.
This turns out to be the best day in many days. He eats some cracker and have more juice.
Tim's counts are: ANC - 360; WBC 500; Platelets - 16000. Because of the lower counts, he get both platelets and 2 units of whole blood later in the evening. Because of all this extra fluid, he gets lisincs. Luckily, it is about 11pm so he can complete his six trips to the bathroom by midnight.
Tim must be well liked as three nurses were fighting over who would take care of him. That happened twice today.
Tim's counts are: ANC - 1232; WBC 1400; Platelets - 20000. That a real improvement over yesterday. Friday still looks good for going home.
Tim doesn't feel all that good this morning. He tries orange juice but it makes a rapid round trip. He rest for awhile and then tries grape and cranberry juice and some crackers which he keeps down. The doctor is going to start cutting back on the IV feeding in an attempt to get Tim to eat.
He goes through the exercises for both PT and OT without complaining. This is a major accomplishment, considering he also did his exercise yesterday without complaining. The doctor wants him to walk around the floor but Tim is not interested as he would have to wear a mask.
Tim's night nurse is Nikki. The only problem at night is the housekeeping staff coming through at 1:30am to empty the trash. They normally empty it about 11pm. Tim is not too happy about the disturbance.
Tim's counts are: ANC - 1848; WBC 2100; Platelets - 17000.
Tim doesn't feel good in the morning. He doesn't like to eat, talk or anything. Mom is down and he isn't much on talking. At 1pm he is disconnected from the IVs in a effort to make him hungry.
I met the mother of another teenage patient in the hall. We have been going through the process together. Her daughter and Tim were admitted to to the hospital on the same day and had rooms across the hall in Dayton.
Tim is still feeling well tonight. He has a bout with the bucket early this evening and doesn't want to even think about eating. He is connected to the IVs at 10pm. He has been off eight hours today.
Tim really starts to feel bad after 11pm. He has two bucket bouts. He is not in pain but just "doesn't feel good."
Tim's night nurse is Nikki. She bring him an A&F catalog. Because he was so sick he has a hard time falling asleep. He is down.
Tim sleeps in (11:30am). He still doesn't feel good and is afraid to eat because he doesn't like throwing up. I am concerned because he needs to eat and start walking if he wants to leave the hospital. He doesn't want to leave the room because he has to wear a mask, which is no big deal on this floor. The doctors feel that once he gets up and starts to move, he will feel better and move closer to getting out. If he doeen't start to move forward he won't get out of here tomorrow!
Tim's counts are: ANC - ????; WBC 2200; Platelets - 21000.
The entire staff is concerned over Tim's bad night. They are trying some new anti-nausea medication tonight. Tim has been sleeping the entire day with a few minutes awake to discuss his problems. Because he isn't up to speed, the doctors decide to keep him in the hospital over the week end. Much to everybody surprize, he doesn't fight the extension.
Because he is sleeping, he misses a visit be one of the characters in a show that is in town. Of course, he is too old for this type thing anyway.
Dad hasn't shaved in a week so I now have a short beard. My wife says it must come off but since I only see her twice a week, I might as well let it grow until Tim gets home.
Tim's counts are: ANC - 1106; WBC 1400; Platelets - 15000.
Tim had a much better night. He looks like himself this morning although he is having stomach cramps. This is due to not eating. He is going to try and eat today and get out and walk. Nikki is his day nurse and she is going to push him to eat and to go walking. Tim will listen to her but not me.
Tim has lost two KG so he will be put back on TPN for longer periods unless he starts to eat.
Tim has received his platelets for the day. He is doing GREAT. He has completed all of his exercises with both OT and PT, standing even. He has downed a container of apple juice, a can of Gatorade and a cookie. Nikki brought him some soft ice cream which Tim eats. He is talking about checking his email for the first time since Monday.
Tim did in fact check his email. Then Nikki got him up and out of the room for the first time in a month. They walked around the floor and then went outside. This floor has an area that is "outside" where they have chairs. All of the nurses are stopping by to stay how impressed they are with Tim today compared with yesterday.
The doctor's ordered some more tests as they think he may have another virus.
The doctor say that he will be able to go home early next week. This will depend on how well he does over the weekend.
Tim's counts are: ANC - 2001; WBC 2300; Platelets - 19000.
After yesterdays great day, Tim had a fitful night. After eating for the first time is several days, the food caused him pain in the lower GIs. He didn't say anything hoping it would go away but instead didn't much sleep until he woke my up around 4:30am. Rebecca gave him some pain medication and he was able to get back to sleep.
Tim eat a little today. He hasn't been feeling all that well so he didn't eat much or move around. I have tried all day to get him up and walking without much luck. I bought him things he thought he wanted to eat but when I got back to the room he decided he didn't want to eat.
He complaining about his legs being sore, and that from not walking. It's hard to get through to teenagers. Even though he wasn't up to speed, I was able to get him to walk around the floor late last night.
Tim's counts are: ANC - 1512; WBC 1800; Platelets - 23000.
Tim had a rough night. He couldn't get to sleep and was flopping around starting about 2am. I rubbed his back and he was able to get to sleep until 4:30am when he started again. He said he wasn't in pain but when Beth came in he got some pain medication and was able to go back to sleep. I think he is sleeping too much during the day. Tim refuses to do anything during the day.
Mom is down for the day - Nice Mother's Day.
Tim is down when mom arrives. These fits are hard on everybody.
The doctors come through and talk with Tim. They want to find out what has caused his fevers. He has spiked over 101 the last two days. Tim has to go downstairs for an X-ray. He rides down and walks back.
I left Tim crackers and apple juice while mom and I go to church and lunch. Tim says they tasted good but only stayed down a few minutes.
Tim received a call from his grandmother, aunts, and uncles this afternoon. While he was not feeling great, this did make him feel better.
Tim started to feel better later in the evening. He even let me take his picture with one of the support staff, without his hat! This is a first. I guess he like this man (I need to get his name tonight).
He was feeling good enough for a teenager shower (30 minutes) before his dressing change.
Tim's counts are: ANC - 1310; WBC 1600; Platelets - 23000.
Tim had a good night until 5am. The pain started back again. Beth, his night nurse, gave him some Tylex which took away the pain and he was able to get back to sleep. The pain started again around 9am so his day nurses, Rebecca and her student Jenny, gave him another Tylex. They also send the Pain Team back and they put him back on MScotton (SP). This is a longer lasting pain medication that should help him get back on track.
He continues to do well this morning and has just completed his exercises with occupational therapy, including standing up.
The pain returns in full force this afternoon. The pain team returns and they develop another plan. The Tylex is losing it effectiveness after 2-3 hours, not close to the every four hour dose Tim can receive. They double the MScotton and replace the Tylex with something stronger. It take 30 minutes but Tim is out of pain. The doctor seems to think the pain is result of too rapid withdrawal from the MScotton. Everybody was pushing to get Tim out of here last Friday or today at the latest and this may have been the problem.
Tim does better with the increased pain medication. He is sort of "out of it" for the evening but appears to be doing better. He has a good night sleep, at least as good as can be had in a hospital with nurse stopping in every so often to check on you or draw labs.
Tim's counts are: ANC - 464; WBC 1200; Platelets - 13000. He received a platelet transfusion this afternoon.
Dad is up at the crack of dawn and drives home. I have to mail something and have a few honey-do projects. I also stop by my office to see if I remember where it was.
When I return, after having to find another way south because of an accident on I-75, I find that Tim is scheduled for a CT. The doctors want to see if they can find the problem in his lower GI. This turns into a real drill as Tim can't take the CT contrast medication because he had a reaction to it in the past. This throws the entire department into an uproar as they try and figure out what to do. It is rescheduled for tomorrow morning but I don't think it will come off as Tim won't be able to handle the premedication that is required. A couple of quarts of liquid
Tim feels much better later in the afternoon. He does his exercises and has a lively discussions with one of the doctors who is a "fellow." He wants to have Tim participate in a research project over the next two years. We come to find out the he is an Air Force doctor and knows the doctors at Wright-Patterson. He also did his undergraduate work at the University of Illinois.
Tim's counts are: ANC - 1144; WBC 1300; Platelets - 15000. He received both a platelet and red blood transfusion this afternoon. There is some concern over the number of donor's platelets he is receiving. I may start being a donor for Tim.
Tim had a great night. His pain is under control. Mom comes down to visit. The doctors finally decided how to do the CT. Mom goes with Tim for this procedure as she was there for his CT at Wright-Patterson and is aware of the reaction he get from IV contrast.
Tim does receive a large envelop with cards and get well greeting from his school.
Tim finally has the desire to eat. However, because of the results of the CT, the doctors think that the transition point between the small and large intestine might have an infection. For this reason, they have decided to keep him from taking anything by mouth for a few days. This occurred in the one hour I was gone. This includes water and oral medication. This is not what both Tim and I where lead to believe from discussions with the doctor. They have started a new antibiotic. The resident stops by and says that they are going to go back to IV pain medication. It is now three hours later and nothing has been delivered. I am getting ready to bolt from this place. The IV PCA morphine pump is back in the room by 11:30pm, about four hours after they said they were going to restart it. Luckily Tim was not in pain during this period.
I find is interesting that after three other doctors poke and prod Tim's lower interests, the resident comes in and does the same thing and then asks Tim if he has any pain. I think that if the resident had four people poke and prod within a relatively short time frame, that she would be in some pain.
The nurses get the idea that we are slightly upset and they stay out of the room unless necessary. Tim's night nurses are Beth and David.
Tim's counts are: ANC - 1863; WBC 2300; Platelets - 25000. He should not receive any platelets today. These counts are high and this should make the staff happy.
Tim has a new nurse today. This seems strange as many of his "normal" nurses are working today. I guess word of the change in attitude in the room has gotten around.
Tim had a fairly good night after the staff finally left around 12:30. The IV pump post is filled up again with four pumps and many bags and bottles. This morning he would almost kill for some water. As I write this he is getting an ultrasound of his large intestine as they try and determine if he does in fact have an infection. I note that there isn't a baby dancing (a local radio station has a commercial where computer graphics baby dances during an ultra sound). The ultrasound results were negative.
Even though his platelet count was high, they still gave him another unit this afternoon.
We are still waiting to hear from the doctor if Tim will be able to eat anything tonight. A gaggle of surgeons and students came wondering by this afternoon and wanted to check Tim stomach. Needless to say that they didn't touch him. The head of the team tried without luck. Soon, nobody will want to come by here. The attitude within the room has become noticeably cooler since last night.
At 5pm Tim was cleared to drink clear liquids. He started with water and moved to Gadorade later in the evening. This improved the overall attitude in the room. We even watched the last Steinfeld.
Tim's counts are: ANC - 1110; WBC 1500; Platelets - 22000. The nurse said he will not be receiving platelets today.
Tim had a good night. He did make a request to the nurse about some of the procedures they do during the night. This will help him have a better night sleep.
He looks better and says he feels better this morning.
The doctor cleared Tim to eat whatever he wanted leaving the amounts and types of food up to him. He asked me to pick up some spring water and gummy bears on my walk so I walked to Kroger, about a mile each way. Tim then eat 10 small bears for his first solid food in a week.
Tim receives a card to from his uncle/aunt which makes every one laugh, including the doctors.
Tim seems to get better in the evenings. He asks for his bed to be evlated so he can watch TV better. Does end up with a headache around 11pm which is taken care of by taking a tylenol.
Tim's counts are: ANC - 1656; WBC 2400; Platelets - 14000. The nurse said he will be receiving platelets today. I input all of the ANC, WBC and platelet numbers into a spreadsheet to see what kind of trend is developing. I am encouraged to see that the trend is in fact upward. I don't have any graphics software here so I can't put it on line.
Tim finally asks why he feels so good in the evening. I point out that he is watching TV and this distracts him. I did get him to watch golf in the afternoon and he feels better. Later in the evening, after he is disconnected, I get him up and we make two circuits around the hallways. This is the first time he has been up in a week and is unsteady but does make it.
Tim does feel good enough to check his email. He had 24.
We have new nurses at night. A student along with a normal nurse. This makes for more distractions during the night as everything takes twice as long. Plus they talk about everything.
Tim's counts are: ANC - 1260; WBC 1800; Platelets - 26000.
Moms here today. She hits him with tough love. I think that Tim needs to start doing thing if he expects to get out of here. Tim starts to response and does get out of bed and sits up for awhile.
Dad is starting to get tried. His beard is coming along.
Tim went on two walks around the floor. He is having a great afternoon and evening. Hopefully this is the start of something better!
I rent a not too good movie, "Cable Guy" for the evening entertainment. Tim also asks for and drinks a small Sprite. We get to bed early but the bobsey twins are the nurses again. Tim doesn't get a good night sleep and also spikes a temperature early in the morning.
Tim's counts are: ANC - 1584; WBC 2200; Platelets - 23000.
Tim had to go for another chest xray this morning. He was permitted to walk to and from this procedure. He was doing fairly well today. I walked out and returned the movie and picked up another one. This is my two mile exercise.
The doctor orders a gallium scan so nuclear medicine comes up and injects the radioactive materials. The scan is scheduled for Thursday.
Tim requests and get Nikki as his night nurse. He starts off bad by getting sick after downing some of his medication. His temperature starts to climb and gets to 103.6. Nikki brings him an ice pack and I place a cold cloth on his face. This helps and his temperature comes down. Nikki draws another blood culture. Because of the temperature, he doesn't have a good night.
Tim's counts are: ANC - 3002; WBC 3800; Platelets - 16000. This is s new high. The doctor wants to hold off on another platelet transfusion until the correct type becomes available unless Tim starts to bleed.
Tim temperature is up again (1pm). The doctors are in a observe mode as they can't get anything to grow from all of the cultures they have collected.
Tim had a fairly good evening. He had a good nights sleep even though his temperature spiked about 12.30.
Tim's counts are: ANC - 3440; WBC 4300; Platelets - 17000. This is s new high. The correct platelets become available this afternoon so Tim gets another transfusion. The doctor is very pleased with the counts. He is even more happy with the way the platelets have been climbing. After the transfusion his platelet climbs to 43,000.
Mom is down for the day. She talks him into doing both OT and PT.
Nuclear medicine came up at noon to get Tim for the scan, which was scheduled for Thursday. We were told that this was scheduled for tomorrow and chase the escort away. After lunch, we were told that the scan is suppose to be today. Tim is not too happy but goes along with this. He walks down and back. The doctor comes in with the results from the scan. They have found the source of infection. They want to do another CT tomorrow to determine the exact location. It was interesting that the equipment used for this scan was older than that used at WrightPatterson AFB. The techs had to move the bed around under the scanner.
After mom leaves, Tim is still feeling pretty good. After he is unhooked, I get Tim up for a walk. We walk around the floor and go out on the roof to look at the fire in the Cincinnati zoo.
Because of the CT on Thursday, Tim has to drink a contrast fluid. He works on it until 2.30am and manages to get down 2/3 of the container. This is the most he has consummed in several days. He even takes a little Sprite.
Tim's counts are: ANC - 3157; WBC 4100; Platelets - 34000. This is down slightly from yesterday but still great. They normally take patients off GCSF (white cell builder) once the WBC has been over 2000 for three days. However, since Tim is have fevers, they elect to keep him on until his temperature stays within the normal range. His red cell count is down so he does receive two units of blood.
The CT is scheduled for 8.30am. We are roused at 8.45 to get dressed and go downstairs. We arrive at CT at 9.00am. Tim isn't feeling too good as he was not permitted to take Tylenol for his temperature. One of the technicians is surprised by the fact that Tim has had a reaction to the CT contrast given just prior to the scan. So she goes off to find out what to do (12.5 benadryl). The doctor that ran the scan last week comes in and says that they will handle the premeds in the same manner that they did last week. Tim continues to feel bad, and maybe even worst. It is now 9.25, 25 minutes after arriving. The technician/nurse gets Tim benadryl started at 9.35am and says that he should be going in for the scan. Tim and I set 10am as the leave time. He finally gets in for the scan at 10am, one hour after arriving for a scheduled appointment. This is unsatisfactory! Tim continues to feel bad and I note his temperature appears to be climbing. I have found that if I can feel heat through his "t-shirt" that his temperature is above 100.
We finally get back to the room at 10.45. He is hot and tired and ends up going to sleep without taking any of the meds that the nurse put out for him. He will be in bad shape when he wakes up as he hasn't taken his tylenol for the fever, mscotton for the pain, and his anti-nausea pills. This has not been a good day!
Tim finally wakes up. His blood pressure is low and this concerns the nurse (Jenny) who talks with the doctor and they give him a quick bag of fluids. He manages to stay awake long enough to get down all his pills. After some more rest he starts to feel better. His temperature comes down and his blood pressure recovers. He even feels like eating a little, half a cookie and four small pretzel sticks.
Tim continues to do better later in the afternoon. He eats more of the cookie and more pretzel bits. Hopefully this will keep up.
The doctor stops by to tell us about the CT scan. The scan shows the is located behind the intestine. He is going to treat it with three different antibiotics. It looks like we will be here until at least next Friday. The doctor wants to get another CT next week to see how the infection is responding. The good news is that there is no sign of the Hodgkins.
Tim is unhooked for awhile so we walk around the floor. This makes him feel better. Later in the evening he has some more pretzels.
Tim's counts are: ANC - 1380; WBC 2000; Platelets - 24000. These are down from yesterday but this is normal.
Tim has a fair day. He is feeling better but still not up to doing much. He remains connected to fluids most of the day so he doesn't get out to walk.
Jenny is his even nurse. She works to get his blood draws completed so he can have a full nights sleep without interruption. Tim requests a specific nurse for the night but this get dropped and Tim get upset and makes this know which doesn't sit well with the staff.
Before going home, Jenny comes in and read Tim the riot act. Since Tim won't listen to me, or for that matter anybody else, this seems to drag things out. Jenny tells Tim that if he expects to get out of here he needs to make an effort. I think this is what responses to, tough love.
Tim's counts are: ANC - 1975; WBC 2500; Platelets - 27000. These are up from yesterday. What is even better is that his platelets are starting to increase by themselves.
Tim is unhooked from all lines around 1230. After getting weighed, he puts on his shoes and starts to walk while I talk to a friend on the telephone. He makes a couple of circuits before stopping and getting me. We make 10 more circuits. I count the paces and come up with about 180 with a stride of approximately 36 inches. This comes out to about 500 feet per lap.
Tim is now hungry and wants the Gadorade. He will then decided on what solid foods he wants. He does manage some pretzel nubs.
After I return from dinner, Tim says he wants to walk some more so we do another 10 laps. This comes out to about two miles for the day. He also drinks a small carton of milk and a box or cereal.
We watch a TV movie and then "Saturday Night Live." Nikki is the night nurse and stays and talks with Tim until she gets called at 1am.
Tim's counts are: ANC - 2250; WBC 3000; Platelets - 19000. These are up again, except for the platelets. I think they will hold off on platelets unless they can get the same donor they had on the last transfusion.
Mom is down for the day.
If you planned on sending Tim a card do it early this week. I would like to have him receive a lot this week.
Tim has a bout with the bucket around noon. He hasn't eaten anything yet this morning so it must be one of the medications. It almost seems that he has this reaction after taking tylenol.
He feels better in the evening and goes for a walk around the floor. He makes it around fours times. Nothing on TV so we go to bed early.
Tim's counts are: ANC - 1794; WBC 2600; Platelets - 32000. These are down from yesterday but still doing great.
Tim has his normal rough morning. By noon he is feeling much better. Because today is a holiday there isn't much traffic. Tim is up enough to walk around the floor and even go downstairs to check out the vending machines. He has to get hook up again after the walk so I run out to get a movie and some fruit drinks as we try to find something he can drink.
After coming back from dinner Tim is up for more walking. He ended up walking about a mile today. He drinks alittle of the fruit drink and this is a start.
Tim's counts are: ANC - 2090; WBC 2900; Platelets - 26000. These are up from yesterday.
No Fever For the first time in a week or so, Tim does not have any fever this morning. This make everybody happy. Tim is up and out of bed early (1pm). He eats a few small items and then we go for a walk and get in 8 laps. We have to stop by the room in the middle as a couple of the Cincinnati Reds stop by to say hi and hand out stuff to the kids on the floor.
Tim has a good day overall. He does well during the night and manages to both eat and drink. He even feels good enough to check his email.
Tim's counts are: ANC - 2619; WBC 3000; Platelets - 29000. These are up from yesterday. Again, the platelets are up on their own. However, because the HLA matched platelets have been ordered, he does receive a transfusion. The doctor says that this should be the last transfusion as his counts are doing great.
Mom is down for the day. She is concerned over a red bird that is attacking the large window at home. This is one of the few trips she has made without having to drive through heavy rain.
Tim is doing great as again he has no fever during the night or day. He is doing great on the new anti nausea medication although it does make him sleepy. We do manage to get him out three times for walks around the floor. He does over a mile total.
Tim has a scan scheduled for tomorrow so he will get to drink CT contrast tonight. He should do OK if he does it like last week, a little at a time. If the scan goes OK, we could be out of here in a few days. I only hope that Tim starts to eat otherwise we will have an IV pump at home for feeding. We might have to have IV antibiotics anyway.
We didn't get much sleep last night, at least not me. I stayed up until 4am getting Tim to drink the CT contrast. He managed to get 12 cc down.
Tim's counts are: ANC - 2916; WBC 3600; Platelets - 44000. These are up from yesterday.
Tim is scheduled for the CT at 11am this morning. Hopefully this one will go better than the last week which give the radiology department an unsatisfactory rating.
The CT scan went great. Tim went in as soon as we arrived. We are still waiting to hear the results.
Tim had a bout to the bucket first the first time in several days. We did get to bed early and he did have a fairly good night.
Tim's counts are: ANC - 2661; WBC 3100; Platelets - 38000. These are down from yesterday. The overall count graph continues to point up.
Hopefully Tim will have a good day. My real concern is his lack of desire to eat. I think he may be afraid to eat because he is afraid of having to go to the bucket.
We still haven't heard anything back on yesterdays scans. From what I have heard, the radiology department has "misplaced" Tim's previous scans. If this is correct, it looks as though they will receive another UNSAT.
Tim's counts are: ANC - 1278; WBC 1800; Platelets - 31000. These are down from yesterday and I am concerned that the trend is lower than before.
The day starts out great. Tim is looking forward to eating and talks about the daily walk. A downward trend starts sometime after lunch. Tim has a bout with the bucket just as Doctor Jean Morris walks in. She orders and IV anti nausea medication. I do notice a pill in the bucket and we find out it is the mscotton (morphine). It had been in for three hours so there is no concern. Doctor Morris does say that teenagers do have more trouble with the TPN (IV feeding). He has been on this because of weight loss for a few days. Tim tells me that the longer he is on the TPN, the looser with BM become.
Tim really gets depressed in the afternoon when he looks in the newspaper and sees the date. He had planned on getting in and out in a record time. Unfortunately, he has had problems with a rotovirus and then the infection in the lower intestine. He expresses his thanks several times for my presence. These are the times he needs support.
We watch TV movies during the afternoon and then the Reds baseball game. This keeps his mind off everything and his spirits improve. After he is disconnected from the IV pumps we walk around the room. He is not as steady as normal and does indicate he has some low discomfort when he takes a deep breath.
He does drink some juice and take a few pretzel pieces as he works toward getting out of here. The evening is fairly normal. We watch TV. Tim is tired so we turn out the lights at 11.45. He does start having diarrhea during this period and a culture is taken.
The trouble starts at 1.30am when Tim heads to the bathroom for a bout with the bucket and diarrhea. He does this at 3.00, 4.30, 6.00, 7.00. With each bout he is throwing up more blood. He complains of pain in the throat because he is throwing up so much. Needless to say, neither of us got much sleep. It is remarkable how you can keep going when necessary.
Tim's counts are: ANC - 3910; WBC 4600; Platelets - 32000. These are up from yesterday.
When Tim throws up at 8am, there is a lot of blood and I get the nurse, Jenny and the resident. When the resident comes in, Tim is tossing around on the bed and can't find any comfortable position. The resident (an Air Force doctor) orders an X-ray of the stomach and intestines to check for blockages. I tell them about the discomfort Tim told me about the day before and request the x-rays include the lungs, to which they readily agree. During the discussion, we come to the conclusion that Tim is having withdrawn symptoms from the morphine. I am told that they had cut the dose from 3 mscotton pills to one the day before. The doctor notes that Tim behavior is classic withdrawal. He orders an IV morphine injection to stabilize Tim. Within five minutes he is calmed down and can lay on the bed.
Another small morphine injection is given and this helps more. Tim is able to rest and the bucket bouts are greatly reduced. Mom was suppose to come down today but Tim didn't want me to leave for an hour so this was put off until tomorrow. The portable x-ray machine is brought into the room and the order procedures are completed. The x-ray results are negative for both the intestines and lungs. Tim is finally able to get to sleep after additional medication is administered IV.
This happened the last time they tried to cold turkey Tim from morphine. They will have to withdraw this medication as a very slow rate to keep this from happening again. Seeing how Tim reacted, I can see how bad this would be for any drug withdrawal, including alcohol. It is not fun watching somebody you love go through this.
Once the pain medication reached the last level, Tim seemed to do better through the day. Because he had thrown up so much during the previous 24 hours, all medication was given IV. Tim was able to rest all day and into the night. He did have a good night sleep.
Tim's counts are: ANC - xxxx; WBC xxxx; Platelets - xxxxx. The lab work got messed up so no counts for today.
The numbers have not been posted yet. I hope that Tim will start to take water by mouth today. He is still upset about throwing up so much and his throat is still sore.
Because mom didn't come down yesterday, she came today. Because she said the grass looked pretty bad, after she arrived here I drove home and cut and bagged the grass. I was about finished with the front grass when the people who were suppose to cut the grass showed up. I actually felt pretty good doing some work. This is only the third time I have been away from the hospital in two months.
While I was gone, they injected Tim for his scan. From what mom said, Tim had a good day and may be bouncing back. The pain team was through and they have developed a slower withdrawal plan which includes morphine patches with increasing lower doses.
I was tried last night so we crashed earlier than normal.
Tim's counts are: ANC - 2694; WBC 3100; Platelets - 36000.
Tim had a good night sleep. Rebecca put the patch on him this morning but they are continuing the IV morphine until tonight.
Tim ended up with a fair day. He was out of it later in the evening and didn't get much walking in.
Tim's counts are: ANC - 480 ; WBC 1200; Platelets - 36000. This is a big drop in counts but the doctors aren't concerned.
GOOD NEWS We are schedule to go home tomorrow. Mom is down and takes some of our "stuff" home. We go over the various things we have to do. Since Tim will have to stay on antibiotics, we will have to get a couple of IV pumps for home. He will be receiving three different antibiotic three times a day. I will get to do these things. He will also have to be on fluids 10 hours per night. Tim got the doctor to drop the TPN (IV feeding) also long as Tim will eat. Tim has to see his doctor in Dayton on Friday and get weighed. As long as he doesn't lose more than five pounds, no TPN.
Tim felt really good during the evening hours. Nikki, one of Tim's favorite nurse had him from 11am to 11pm. She is fun but firm and gets Tim to do things. Tim did get out and walk for 15 minutes doing about 3/4 mile which made everybody happy. Tim did get his picture taken with many of the nurse that were around during the evening hours.
Tim's counts are: ANC - 812 ; WBC 1400; Platelets - 30000. This is recovery from yesterdays drop but still low. I asked the doctor but he was not concerned as this is normal when white blood growth factor is reduced. The GCSF has been reduced to every other day.
We head off to nuclear medicine first thing in the morning for a scan. They are waiting for Tim and we get right in. The scan process takes an hour and a quarter. From what I can see and from what Tim says, the infection in his lower GI is very small.
When we get back to the room, Dr Harris is there and we go over the discharge procedures. We are visited by a couple of other people but manage to escape by 1.30pm. Tim walks all the way to the car and makes the one hour trip home without problem.
The next set of fun is home care setup. We are getting the medicines and equipment from one company in Cincinnati while the nursing support comes from a company in Dayton. Tim is suppose to have his antibiotic at 2.30, 3.00, and 3.30. This stuff doesn't arrive until 5pm, after the nurse. We (I) get trained on the procedures and we start Tim. He is to get antibiotics for ten days every eight hours. He is also on fluids for 10 hours over night. I actually have no problems and everything appears to work correctly. I do get to bed around 1am after getting everything done.
Tim is hungry and eats alittle, some turkey and cheese. It's a start.