Tuesday, February 12
Day 30
How can a day have so many peaks and valleys? It started out as a difficult day because John took his walk early this morning before breakfast, and in his words, "That took it all out of me." He had a little breakfast but not enough energy to really eat up as he needs to and then slept the whole morning.
I had talked to a good friend of mine on the phone, who is also going through a tough time with her sick husband. Having read Joshua 1:9 to John this morning, I shared it with her, "Have not I commanded you, be strong and of a good courage; be not afraid neither be thou dismayed for the Lord they God is with you." We also talked about "Giving thanks in everything" and accepting what is.
But, before the morning was past, I was the one discouraged, fearful, complaining, and certainly NOT giving thanks. Easy to preach it, harder to live it!
Specifically, the doctor had been in to say that John could go to acute rehab as soon as a bed was available. Well, that's good. To me, that sounds like SOON. Then I talked to the social worker who works on arranging for the right place, contacting our insurance, and all those details. SHE said, he would be ready to go Friday or Monday, and whether he goes to acute or sub-acute is still being decided by the insurance company. Really? SO, which is it? I was confused and dismayed and just generally MAD. I was MAD with all the delays, MAD with the conflicting information, MAD with John for being so weak both yesterday and now again today. This waiting game is for the birds...I mean, this is day 30!
Time to eat my own words: be strong, don't be afraid, be thankful for everything....
I ate lunch, tried to help John eat his, but he still didn't have much strength to eat. What I needed was a break....so decided to go back to the Lodge for some comfort and some MINT CHOCOLATE CHIP ice cream! While I was eating it, a young family was there with a squally baby just three months old. They said she had colic and that a nurse at the hospital had suggested chamomile tea. Well, I said, I have some. So I made it, cooled it, and they let me hold her. She just guzzled that tea right down. Eventually I was able to get her to sleep. It was a very pleasant distraction from my feelings of anger and frustration. In my room, I took a good nap and walked back to the hospital feeling refreshed and ready to face the late afternoon.
John was more awake when I returned. I was able to almost finish cutting his hair and trimming his beard. After that he asked for us to sing some songs together, choosing "Beautiful Valley of Eden," a very old song! I found the words on line and sang it, then sang along with some YouTube videos he likes, "All in All" and "How great is our God". We were just getting ready to watch some funny you tube videos, since laughing is good medicine, when in walks Dean Coridan, John's Conference President. We just finished a wonderful visit with him and we were so blessed. He laid it on the line that John had better focus on 1) keeping his relationship with the Lord in focus; 2) keeping his family strong and intact; and 3) gaining his strength back. If John appears to be getting involved too quick, Dean will nip it in the bud. Good counsel from a wise man! We all know that too much too soon will be totally counterproductive. Dean was also emphatic that once we are ready to start ministry again, that is the time to take another month off for vacation to really solidity John's healing and stamina. Interesting! John said he was looking forward to a good vacation with me. We can picture it already...walking some beautiful beach, swimming in the waves, soaking up the rays. Right now, that seems a long way off...since John cannot even get up out of a chair yet!
So, as low as we were at one point today, we have ended it well. John was able to eat a good supper and now he is ready to be put to bed and watch some TV....really?! That's progress....that's the FIRST time I have heard him say that since we've been here.
And me, I am feeling considerably more courageous and a whole lot less fearful, and I'm definitely not mad anymore....praise God! It's hard to put all this out there but once again, this is my reality.
Regina has been his night nurse pretty consistently lately. Just now, she told me that when she comes into this room, she feels that John is a person who is special to God. Last night, she told John that she sees her purpose as blessing him, though she had already been feeling that for several days and definitely already had been blessing him! He's gotten better, she can see, and she encourages him that he is going to completely leave all this behind him. She and Danae, his day nurse, are taking out his DoBhoff Feeding Tube right now, such great news! Bless you, Regina.
Tomorrow, my plan is to post a picture of John without his feeding tube. He looks so much better....
Tuesday, February 12, 2013
Still Monday
Barnes Lodge is a place for people like us who are far from home, where we can have a sleeping room and access to the central kitchen and living areas. I took a few pictures to show you how simple my room is. I pay $30 for the first single bed, $30 for the second, then $10 for up to three futons for the floor. In the picture below you see the messed up futon on the floor.
I had thrown away the flowers that were left of the bouquet from Rolla Church. Smart-alec Winston pulled it out of the trash and presented it to Karissa as a token of his love....my, did we laugh at that!
What we appreciate so much about the Lodge is the kitchen. We have a couple shelves for our cold food and a pantry for the rest. We eat breakfast there and then I usually bring my lunch with me and ask the nurses to warm up my leftovers in their staff kitchen. People from the Central Seventh-day Adventist Church, which is just a couple miles from here, have brought wonderful food for us; Korean, Indian, Italian, and good ol' comforting Chicken Pot Pie. Angela, my friend and the pastor's wife, has brought me little odds and ends that I have wanted like olive oil, margarine, and then friends have brought small items I've requested as well. After eating out and in the cafe that first week, the home-made healthier food has been great!
I've had very little time to sit and enjoy the living areas and TV room. But having the central kitchen has been worth the expense...we all agree!
In the morning, I usually walk here from the Lodge. It's probably about three blocks. In the evening, I take the shuttle back cause they don't want us walking it alone. Our area is fine but just one street over it isn't supposed to be OK!
Barnes Lodge is a place for people like us who are far from home, where we can have a sleeping room and access to the central kitchen and living areas. I took a few pictures to show you how simple my room is. I pay $30 for the first single bed, $30 for the second, then $10 for up to three futons for the floor. In the picture below you see the messed up futon on the floor.
I had thrown away the flowers that were left of the bouquet from Rolla Church. Smart-alec Winston pulled it out of the trash and presented it to Karissa as a token of his love....my, did we laugh at that!
What we appreciate so much about the Lodge is the kitchen. We have a couple shelves for our cold food and a pantry for the rest. We eat breakfast there and then I usually bring my lunch with me and ask the nurses to warm up my leftovers in their staff kitchen. People from the Central Seventh-day Adventist Church, which is just a couple miles from here, have brought wonderful food for us; Korean, Indian, Italian, and good ol' comforting Chicken Pot Pie. Angela, my friend and the pastor's wife, has brought me little odds and ends that I have wanted like olive oil, margarine, and then friends have brought small items I've requested as well. After eating out and in the cafe that first week, the home-made healthier food has been great!
I've had very little time to sit and enjoy the living areas and TV room. But having the central kitchen has been worth the expense...we all agree!
In the morning, I usually walk here from the Lodge. It's probably about three blocks. In the evening, I take the shuttle back cause they don't want us walking it alone. Our area is fine but just one street over it isn't supposed to be OK!
Monday, February 11, 2013
Monday, February 11
Day 29
When John was doing so poorly after his third surgery, we asked his sister Ruth to come. She and Esther (pictured at right here with Karissa and Winston) came and stayed a long weekend with me. I was glad, they were glad, and John was glad that they came all the way from Walla Walla and Oregon to see us. They are pictured here at the zoo where they went for a long walk on Sabbath afternoon.
This last Sabbath evening, Scott and Beth Haakanson stopped by. They pastor at Sunnydale. They are a young family and recently experienced some similar health challenges with Beth being hospitalized for nearly a month, with long months of rehab. So their visit was a blessing, Scott being able to relate to me and Beth being able to relate to John.
It was interesting because we had just completed some hot fomentation treatments for John's lung congestion. Low and behold, Scott and Beth brought some electric moist heat fomentation pads. We had used my rice bags and they worked good, too. But it was great that they brought the other kind. Great minds run in the same channels! Karissa and I and Winston repeated the treatment that evening and once again on Sunday before they left.
So now it is a sunny Monday. John's urine output has increased. That's what the doctors are looking for in order to phase out dialysis...that's something we LONG for! While in dialysis, John produced 200 cc of urine in the urinal. Keep praying for improved kidney function!
Yesterday, John's last chest tube was removed. He still has a wound vac and a jp drain. These can be disconnected so that when he walks, he is free of encumbering tubes! When he would walk before in ICU, they had to have a large wheelchair to carry all the paraphenalia required, in addition to pushing along his IV pole with multiple IV lines. Usually there were three of us assisting him...talk about our entourage! Gradually, these tubes and IVs have been removed, each one showing his improvement. So, to be FREE of all this is to be FREE INDEED.
He walked yesterday with Miriam alone assisting. She brought along the MerriWalker, a chair enclosed with arm rails and straps so that when tired, the patient can simply sit down. With three rests along the way, John walked to the waiting room, about 100 feet or so. Then he rested a while, walking back to his room with just one rest period. He is definitely getting stronger and I am so glad. We are hopeful that his feeding tube will come out today. He's been eating well since Thursday and needs to keep it up to regain what he has lost. Tube feedings are only at night now. The renal diet he is on is not much fun, though. Hope that will go away soon.
I am looking forward to being home before long. My arms and shoulders are extremely sore and my back was aching me too. I've stopped trying to help the nurses lift him and so my back is better. But my arms don't feel good, first from carrying my backpack. With laptop, book, wallet, water, and other necessities, it just got too heavy and I realized it was starting to be a problem. Now I bring my roller suitcase. But even that is hard to lug around all day. So being home will be a blessing in many ways!
Love to you all and thank you for your love, care, and concern. Please understand that we have not meant to "spurn" anyone by not wanting visitors. John has ALWAYS told me that if he is ever in the hospital that I am not to tell ANYONE. Well, everyone does know! Many of you have wanted to come. At first I encouraged people, telling them they could visit with me. By the end of that first horrendous week, however, I realized that I was not able to keep my focus on John AND see the people coming. John has seen quite a few people, but since we have had fewer visitors, he really has been able to get the rest he needs. Soon enough, I think, there will be time for some quality visits. Thank you for understanding and for your patience. Only if one has been through a catastrophic medical event can they understand this. I've talked to many family members here in similar circumstances to ours and there is that understanding that rest is so crucial at this time.
Day 29
When John was doing so poorly after his third surgery, we asked his sister Ruth to come. She and Esther (pictured at right here with Karissa and Winston) came and stayed a long weekend with me. I was glad, they were glad, and John was glad that they came all the way from Walla Walla and Oregon to see us. They are pictured here at the zoo where they went for a long walk on Sabbath afternoon.
This last Sabbath evening, Scott and Beth Haakanson stopped by. They pastor at Sunnydale. They are a young family and recently experienced some similar health challenges with Beth being hospitalized for nearly a month, with long months of rehab. So their visit was a blessing, Scott being able to relate to me and Beth being able to relate to John.
It was interesting because we had just completed some hot fomentation treatments for John's lung congestion. Low and behold, Scott and Beth brought some electric moist heat fomentation pads. We had used my rice bags and they worked good, too. But it was great that they brought the other kind. Great minds run in the same channels! Karissa and I and Winston repeated the treatment that evening and once again on Sunday before they left.
So now it is a sunny Monday. John's urine output has increased. That's what the doctors are looking for in order to phase out dialysis...that's something we LONG for! While in dialysis, John produced 200 cc of urine in the urinal. Keep praying for improved kidney function!
Yesterday, John's last chest tube was removed. He still has a wound vac and a jp drain. These can be disconnected so that when he walks, he is free of encumbering tubes! When he would walk before in ICU, they had to have a large wheelchair to carry all the paraphenalia required, in addition to pushing along his IV pole with multiple IV lines. Usually there were three of us assisting him...talk about our entourage! Gradually, these tubes and IVs have been removed, each one showing his improvement. So, to be FREE of all this is to be FREE INDEED.
He walked yesterday with Miriam alone assisting. She brought along the MerriWalker, a chair enclosed with arm rails and straps so that when tired, the patient can simply sit down. With three rests along the way, John walked to the waiting room, about 100 feet or so. Then he rested a while, walking back to his room with just one rest period. He is definitely getting stronger and I am so glad. We are hopeful that his feeding tube will come out today. He's been eating well since Thursday and needs to keep it up to regain what he has lost. Tube feedings are only at night now. The renal diet he is on is not much fun, though. Hope that will go away soon.
I am looking forward to being home before long. My arms and shoulders are extremely sore and my back was aching me too. I've stopped trying to help the nurses lift him and so my back is better. But my arms don't feel good, first from carrying my backpack. With laptop, book, wallet, water, and other necessities, it just got too heavy and I realized it was starting to be a problem. Now I bring my roller suitcase. But even that is hard to lug around all day. So being home will be a blessing in many ways!
Love to you all and thank you for your love, care, and concern. Please understand that we have not meant to "spurn" anyone by not wanting visitors. John has ALWAYS told me that if he is ever in the hospital that I am not to tell ANYONE. Well, everyone does know! Many of you have wanted to come. At first I encouraged people, telling them they could visit with me. By the end of that first horrendous week, however, I realized that I was not able to keep my focus on John AND see the people coming. John has seen quite a few people, but since we have had fewer visitors, he really has been able to get the rest he needs. Soon enough, I think, there will be time for some quality visits. Thank you for understanding and for your patience. Only if one has been through a catastrophic medical event can they understand this. I've talked to many family members here in similar circumstances to ours and there is that understanding that rest is so crucial at this time.
Sunday, February 10, 2013
Sunday, February 10
Day 28
From Karissa's Facebook
Back in St. Louis with Dad :) Winston and I drove up yesterday and got here about 10. He was so happy to see us this morning.... I fed him a big breakfast and it was the first time he has eaten a full meal so that is excellent. And yes, he finished it off with some ice cream. He told me... "You have no idea what it's like to have no food or water for weeks..."..... and I can't even imagine. I get grumpy if I don't eat every four hours haha. He has lost a significant amount of weight so we will try to provide extra nourishment now that he can eat real food again. He has not seen himself for almost a month.....so this morning I brought a mirror and he realized that he doesn't look half bad... just a longer beard! Still praying for full recovery of his kidneys and that his infection will be completely wiped out! Those are the main concerns as of now. I am so glad to be with him again.... wish I could be here more. It is a very long recovery process from here so we will continue to try and cheer him up and be here as much as we can!! Thank you for all the sweet messages and cards and treats.... such a blessing and it's so nice to know people care.
Day 28
From Karissa's Facebook
Back in St. Louis with Dad :) Winston and I drove up yesterday and got here about 10. He was so happy to see us this morning.... I fed him a big breakfast and it was the first time he has eaten a full meal so that is excellent. And yes, he finished it off with some ice cream. He told me... "You have no idea what it's like to have no food or water for weeks..."..... and I can't even imagine. I get grumpy if I don't eat every four hours haha. He has lost a significant amount of weight so we will try to provide extra nourishment now that he can eat real food again. He has not seen himself for almost a month.....so this morning I brought a mirror and he realized that he doesn't look half bad... just a longer beard! Still praying for full recovery of his kidneys and that his infection will be completely wiped out! Those are the main concerns as of now. I am so glad to be with him again.... wish I could be here more. It is a very long recovery process from here so we will continue to try and cheer him up and be here as much as we can!! Thank you for all the sweet messages and cards and treats.... such a blessing and it's so nice to know people care.
Saturday, February 9, 2013
Sabbath, February 9
Day 27
It's such a blessing to have Winston and Karissa here. Their presence comforts me, takes the burden of John's care off of me, and provides some healthy diversion. They arrived about 10 last night, driving the 7 1/2 hours here from Southern.
Dialysis was not nearly so bad yesterday, only because they gave him a unit of blood AND some iron. After it was all done, he asked me to scratch his rashy arms and legs. First I rubbed and then I used my fingernails and he just got this most delightful expression on his face, as though this the first pleasurable feelings he'd had in almost four weeks. I kept it up for the 30 minutes until the transport team arrived. He's asked me to scratch him again this morning and that's an easy request to fulfill.
He did have some pain last night, his first in a while. He has an incision on his lower left abodomen which has developed a swollen area. The doctors have said it is OK but when the nurses
moved him, he said he felt a tearing in that area and them some pain. Not sure he slept very well last night with that and everything else.
A Physical Therapy Assistant came today. She put a safety belt around him and with me holding his arm, we proceeded to walk all the way to the waiting area, saying he felt secure with the safety belt around him. At the waiting area, he rested, then could not stand up well enough to come back so he was wheeled back.
Again today, John is more himself even than yesterday! He is more alert and has asked Karissa and Winston some excellent questions. Now, to just get his strength built up! They are feeding him now and he ate well.
Soon as we get him fed and to bed for a rest, we will go and eat ourselves!
Some kind soul from the Central SDA Church here in St. Louis is bringing us food so we will go and check that out.
Dr. Maniar just came through along with the anesthesiologist. The cultures are coming back negative on his chest tubes and they are no longer draining, so another one will be removed today, with one more to go. If he continues to eat well, the tube feeding will be out by Monday or Tuesday. So, it is possible that we could be discharged (not sure just where yet!) by the middle of the week. Wow, that's great progress. Dr. Maniar could see that he was more alert and more himself, too....
Day 27
Karissa provided some support for his head. |
Dialysis was not nearly so bad yesterday, only because they gave him a unit of blood AND some iron. After it was all done, he asked me to scratch his rashy arms and legs. First I rubbed and then I used my fingernails and he just got this most delightful expression on his face, as though this the first pleasurable feelings he'd had in almost four weeks. I kept it up for the 30 minutes until the transport team arrived. He's asked me to scratch him again this morning and that's an easy request to fulfill.
He did have some pain last night, his first in a while. He has an incision on his lower left abodomen which has developed a swollen area. The doctors have said it is OK but when the nurses
moved him, he said he felt a tearing in that area and them some pain. Not sure he slept very well last night with that and everything else.
A Physical Therapy Assistant came today. She put a safety belt around him and with me holding his arm, we proceeded to walk all the way to the waiting area, saying he felt secure with the safety belt around him. At the waiting area, he rested, then could not stand up well enough to come back so he was wheeled back.
Karissa snuggled up to her Daddy while I give him water. |
Soon as we get him fed and to bed for a rest, we will go and eat ourselves!
Some kind soul from the Central SDA Church here in St. Louis is bringing us food so we will go and check that out.
Dr. Maniar just came through along with the anesthesiologist. The cultures are coming back negative on his chest tubes and they are no longer draining, so another one will be removed today, with one more to go. If he continues to eat well, the tube feeding will be out by Monday or Tuesday. So, it is possible that we could be discharged (not sure just where yet!) by the middle of the week. Wow, that's great progress. Dr. Maniar could see that he was more alert and more himself, too....
Friday, February 8, 2013
Friday, February 8
Day 26
Here's a Christmas shot of all six of us at Christmas time. Natasha had this printed for me on a large canvas and it looks so nice. I should have it here for John to see. We do have a small picture of the girls so he can know part of what he is working for!
Yesterday afternoon, he asked me to come over to him and said, "I have some questions about the second surgery." Amazing! "What was the purpose of that surgery?" he asked So I told him it was to check for infection, to wash out the wound, and to culture the chest cavity. Visually, they seemed to think the incision infection was only subcutaneous and had to wait for the culture report. I explained that all the cultures came back positive, indicating a massive chest infection. "Where did the infection come from?" I told him it really isn't clear but it may have been a nosocomial or hospital-induced infection. The bug is Pseudomonas and most of these are nosocomial. Then he asked about his third surgery. Oh, wow...he DOES know! So I had to explain how extensive it was, that they had to reopen his chest, now for the third time, AND open his abdomen. I asked if he knew about that incision and he said no though before-hand, he had told me he had seen his whole body and it reminded him of how Jesus had been wounded.
I explained how they had taken some of his abdominal muscle and some omentum and placed it around his chest cavity to help fight the infection. He was amazed at what they had done to him and I had to say, "They were saving your life." All this is a lot for him to fathom. I also told him how difficult those next five days were and how there was no good news until that Friday. Interesting!
He's been smiling more and even said "I'm sorry" when he did something not so nice. He did ask why we had been so hard on him. So I had to explain that we were just trying to get him to fight. He said that was hard on him at times and sort of defeated his spirits. I explained that he did ask me to push him and that I was trying to do what he had asked.
One more eye-opened happened just at bedtime when they came in to weigh him, as they do each night. The scale read 140. He said, "It used to be 184." So he realizes what he has lost. This is hard for me and left me feeling sad all evening.
Day 26
Here's a Christmas shot of all six of us at Christmas time. Natasha had this printed for me on a large canvas and it looks so nice. I should have it here for John to see. We do have a small picture of the girls so he can know part of what he is working for!
Yesterday afternoon, he asked me to come over to him and said, "I have some questions about the second surgery." Amazing! "What was the purpose of that surgery?" he asked So I told him it was to check for infection, to wash out the wound, and to culture the chest cavity. Visually, they seemed to think the incision infection was only subcutaneous and had to wait for the culture report. I explained that all the cultures came back positive, indicating a massive chest infection. "Where did the infection come from?" I told him it really isn't clear but it may have been a nosocomial or hospital-induced infection. The bug is Pseudomonas and most of these are nosocomial. Then he asked about his third surgery. Oh, wow...he DOES know! So I had to explain how extensive it was, that they had to reopen his chest, now for the third time, AND open his abdomen. I asked if he knew about that incision and he said no though before-hand, he had told me he had seen his whole body and it reminded him of how Jesus had been wounded.
I explained how they had taken some of his abdominal muscle and some omentum and placed it around his chest cavity to help fight the infection. He was amazed at what they had done to him and I had to say, "They were saving your life." All this is a lot for him to fathom. I also told him how difficult those next five days were and how there was no good news until that Friday. Interesting!
He's been smiling more and even said "I'm sorry" when he did something not so nice. He did ask why we had been so hard on him. So I had to explain that we were just trying to get him to fight. He said that was hard on him at times and sort of defeated his spirits. I explained that he did ask me to push him and that I was trying to do what he had asked.
One more eye-opened happened just at bedtime when they came in to weigh him, as they do each night. The scale read 140. He said, "It used to be 184." So he realizes what he has lost. This is hard for me and left me feeling sad all evening.
Thursday, February 7, 2013
Thursday, February 7
Day 25
Every day when I start my blog, it takes me a while to figure out the date and the day! My brain is pretty much mush after all this wear and tear! What I do with John, most every day, is to show him the calendar and outline the past weeks' events and tell him today's date. Just part of keeping him oriented. There's also a clock on the wall so he can read the time. Yet when I try to write the date down, I have to go back and remind myself what today is!
So, it's been another pretty rough day, but I TRUST that it is getting better. I went with him just now down to the Speech Therapy Department for his Swallow test. He's been so thirsty for so long that we have been eagerly looking forward to him being able to drink and eat again. We were in a high-tech room for the test and I was behind a shield with my own monitor. John was sitting up with x-ray machines all around, nearly. The Therapist gave him thick pudding and two other substances while the radiologist took pictures as he actually swallowed. It was very interesting to see his internal structures functioning as he swallowed.
The Therapist said that his swallowing mechanism is fine and that he can have food and drink.. That was an hour and half ago. But the therapist's orders take a while to trickle down (pun intended) and John is totally frustrated with having to wait. I mean, he was waited DAYS for this and now the delay seems unbearable. I've cheated and given him some of MY water when the nurses are not here!
Just a little while ago he said, "Tonight we will pray and maybe this will be a turning point!" He has been so extremely weak and has not successfully walked these last two days. Today, trying to think through why this might be, I looked into the bottom eye-lid and it is very pale. My mom, being a nurse-midwife years ago, did not have all the advantages we have today. To check her patients' hemoglogin level, she knew what color the eye-lid should be. When Karissa was born, I had a major bleed and the hospital wanted me to have a transfusion. We opted not to and my mom fed me well with lots of high iron foods and would daily monitor my eye-lids. She could easily see that my body was building back up.
Sure enough, John's eye-lids are very pale. When the nurse checked his latest blood count, his hemogobin is 9. Well, I assured them, John does not feel strong at a reading like that. He tends to be anemic and must take iron every day. If he misses it for even three days, his energy diminishes quickly. I had shared that with the doctors initially but they didn't want the constipating effects of the iron. Hopefully tomorrow, his renal doctor said, they can give him some iron during dialysis. I think it will strengthen him.
Ashley and Sonia just came back in and are giving him his cup of water with a straw in it. He's taken a sip and appreciated it. Ashley has been his nurse for three days and Sonia is being oriented. I just gave them both a home-made rice bag and explained how to use it. They have been trying their best to motivate John to push through this weakness. I've appreciated their care and concern.
This morning, an Indian lady from Central Church dropped by some food. She brought Indian bread and indian potatoes plus two salad mixes (have been missing veggies and salad lately!) and three cans of soup. So you can guess what I had for lunch and it was delicious.
Jackie Palmieri came with our family to Mexico a couple years ago. We all enjoyed the time together so much. She's still a good friend and sent me my first edible bouquet....so lovely and so delicious!
Day 25
Every day when I start my blog, it takes me a while to figure out the date and the day! My brain is pretty much mush after all this wear and tear! What I do with John, most every day, is to show him the calendar and outline the past weeks' events and tell him today's date. Just part of keeping him oriented. There's also a clock on the wall so he can read the time. Yet when I try to write the date down, I have to go back and remind myself what today is!
So, it's been another pretty rough day, but I TRUST that it is getting better. I went with him just now down to the Speech Therapy Department for his Swallow test. He's been so thirsty for so long that we have been eagerly looking forward to him being able to drink and eat again. We were in a high-tech room for the test and I was behind a shield with my own monitor. John was sitting up with x-ray machines all around, nearly. The Therapist gave him thick pudding and two other substances while the radiologist took pictures as he actually swallowed. It was very interesting to see his internal structures functioning as he swallowed.
The Therapist said that his swallowing mechanism is fine and that he can have food and drink.. That was an hour and half ago. But the therapist's orders take a while to trickle down (pun intended) and John is totally frustrated with having to wait. I mean, he was waited DAYS for this and now the delay seems unbearable. I've cheated and given him some of MY water when the nurses are not here!
Just a little while ago he said, "Tonight we will pray and maybe this will be a turning point!" He has been so extremely weak and has not successfully walked these last two days. Today, trying to think through why this might be, I looked into the bottom eye-lid and it is very pale. My mom, being a nurse-midwife years ago, did not have all the advantages we have today. To check her patients' hemoglogin level, she knew what color the eye-lid should be. When Karissa was born, I had a major bleed and the hospital wanted me to have a transfusion. We opted not to and my mom fed me well with lots of high iron foods and would daily monitor my eye-lids. She could easily see that my body was building back up.
Sure enough, John's eye-lids are very pale. When the nurse checked his latest blood count, his hemogobin is 9. Well, I assured them, John does not feel strong at a reading like that. He tends to be anemic and must take iron every day. If he misses it for even three days, his energy diminishes quickly. I had shared that with the doctors initially but they didn't want the constipating effects of the iron. Hopefully tomorrow, his renal doctor said, they can give him some iron during dialysis. I think it will strengthen him.
Ashley and Sonia just came back in and are giving him his cup of water with a straw in it. He's taken a sip and appreciated it. Ashley has been his nurse for three days and Sonia is being oriented. I just gave them both a home-made rice bag and explained how to use it. They have been trying their best to motivate John to push through this weakness. I've appreciated their care and concern.
This morning, an Indian lady from Central Church dropped by some food. She brought Indian bread and indian potatoes plus two salad mixes (have been missing veggies and salad lately!) and three cans of soup. So you can guess what I had for lunch and it was delicious.
Jackie Palmieri came with our family to Mexico a couple years ago. We all enjoyed the time together so much. She's still a good friend and sent me my first edible bouquet....so lovely and so delicious!
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