Hiedi Melin's email journal keeping family and friends up to date on her mothers condition.
March 29, 2002
Dear Family & Friends --
Many of you are aware of the trama that my mom has gone through over the last 2 months. For those of you that are not aware, here is a brief recap, as well as an update on her condition....
On Feb. 12th my mom was admitted to John Muir Hospital in Walnut Creek with severe abdominal pain. Over the following 2-1/2 weeks, she endured many tests, suffered with severe pain, and was treated for what the doctors’ thought were "colitis", or inflammation and ulceration of the colon. When her condition did not improve, the doctors at John Muir recommended that she be transferred to UCSF to be treated by specialists. On Saturday, March 2nd, mom was transferred to UCSF by ambulance. The doctors at UCSF immediately performed a colonoscopy and did not find any signs of "colitis." They determined that mom’s abdominal pain, and inability to eat, was likely due to a ruptured appendix. They performed exploratory laparoscopic surgery and found and removed the ruptured appendix, as well as a number of abscesses that had formed as a result of the appendix bursting weeks earlier. On March 11th, mom was released from UCSF and headed home to continue to recover.
She spent the next 2 weeks at home resting, as well as catching up on everything that she had missed while in the hospital for nearly one month. We had pizza together at Todd's new house, and mom even attended one of Mason's baseball games. Although she was tired, she appeared to be on the road to recovery!
On Saturday, March 23rd, mom was re-admitted to UCSF with a very high fever and abdominal pain. A scan showed that she had developed additional abscesses. On Monday, March 24th, they attempted to drain the abscesses with a needle. Unfortunately they were unable to reach the largest abscess, and in the process, punctured her small intestine. At that point she required emergency surgery not only to remove the abscesses, but to repair the damaged small intestine. The surgery went smoothly, and the surgeon removed a very large abscess, and repaired the small intestine. Unfortunately, mom has not recovered well from the surgery. The infection appears to have spread into her lungs, and she has had severe difficulty with breathing. She has been in the Intensive Care Unit at UCSF since Wednesday (March 27th). Her body is exhausted from fighting, and early yesterday morning it became necessary to put her on a ventilator. This has required her to be heavily sedated. We are hoping and praying that this will allow her to rest and continue to fight the infection. There are a few good signs.... her white blood cell count has been down over the last couple of days and her blood pressure seems to have stabilized.
The ICU doctors are preparing us for what may be a "long haul." The infection in her lungs appears to be something called Adult Respiratory Distress Syndrome (ARDS), and patients are able to recover fully from this disease, but it takes time. We are taking it one day at a time at this point, and trying to focus on the positive.
I plan to send an e-mail every few days to keep everyone up-to-date on Mom’s condition. Please keep her in your thoughts and prayers.
April 2, 2002
Family & Friends ---
Over the last 2 days we haven't had any dramatic changes. This is good. Mom's oxygenation has improved slightly, and her kidney function has not deteriorated any further. Her white blood cell count is down from a high of 17 last week to 7.1 today...which I understand is in the "normal" range. The CAT scan that was done on Monday did show some fluid in her abdomen, but apparently some fluid is to be expected following the type of surgery that she had a week ago. They will most likely do another CAT scan in the next few days to continue to monitor the situation.
She has been retaining quite a bit a fluid, and this is causing her body to swell pretty dramatically. The doctors have tried giving her diuretics, but this has caused her blood pressure to go down. They may try some other procedures tomorrow to help reduce her fluid retention.
So, the good news is...there is no real bad news from the last couple of days. The ICU doctors have indicated that we will probably experience some "good days" and some "bad days." The last 2 days are considered "good days".... and we hope to get a few more of those under our belt soon. :)
Again, thanks for your thoughts and prayers.... and for all of the wonderful calls and e-mails we have received. It really means a lot to us to have such terrific support.
April 4, 2002
Friends & Family --
We have had 2 more days without any dramatic changes. Mom continues to make progress with her oxygenation, and her chest x-rays have also shown some improvements. She has not had any fever in the last 2 days and her white blood cell count remains in the normal range. We are all hoping that this means that she is beating the infection.
She remains on the ventilator and therefore, she is still heavily sedated. The doctors continue to "step down" the level of oxygen and support that she receives from the ventilator. This is definitely a step in the right direction.
Although it is frustrating that things don't seem to be improving dramatically (many of you know that patience is not necessarily a Mercer family trait!!).... we are trying to appreciate the small improvements that Mom is making each day.
Keep those thoughts & prayers coming. Thanks for all of the support.
April 6, 2002
Family & Friends ---
No dramatic changes in the last two days. Small improvements have been made with mom's kidney function, and they have been able to give her some diuretics to help reduce the fluid that she has been retaining. The doctors are encouraged that the diuretics have not had an adverse affect on her blood pressure. They are also encouraged that moms white blood cell count and her temperature have remained in the normal range for more than 72 hours.
Unfortunately, mom has not made the same progress with her oxygenation. She remains on the ventilator, and therefore, is still heavily sedated. The doctors are hopeful that her oxygenation will improve as her fluid retention slowly is reduced.
We continue to look forward to small baby steps in the right direction.
April 10, 2002
Update on June's condition - Day 14 in ICU
Mom is still in ICU, on the ventilator and heavily sedated. Although her condition has not dramatically improved, she is stable and she continues to make some small steps forward. Her blood pressure is tolerating the use of diuretics to reduce her fluid retention. This is good news because it means that her body is ready to shed the fluid, and the doctors are hoping that her oxygenation will improve once she is able to reduce the amount of fluid in her body. Her temperature and white blood cell count still remain in the normal range...this is also a good sign because she finished her course of heavy duty antibiotics 48 hours ago. Her kidney function is stable, and has improved very slightly over the last few days. In addition, they have begun giving her some liquid nutrition directly to her stomach. This is positive because the body absorbs nutrients better through the digestive tract than through the intravenous nutrition (TPN) that she has been on via an IV. This will hopefully allow her to build more strength to fight the ARDS (Acute Respiratory Distress Syndrome) that is
affecting her lungs.
We are hoping and praying that we make some more substantial improvements
in the coming days. Although it is comforting to know that she is not in pain due to the heavy sedation, it is also frustrating not to be able to communicate with her. Many of you have asked if she is responsive, or able to talk or communicate at all.... and unfortunately, she is not. The sedative (fentynal) is very powerful, and allows mom to be in a very heavy sleep-like state. We are all looking forward to the day that she taken off the ventilator and she can "wake up" and communicate with us again. Boy, will we have a lot to catch her up on.
Thanks for all of the positive thoughts and prayers...keep them coming.
April 12, 2002
Update on June's condition - Day 16 in ICU
Mom condition has not changed dramatically. She did have a tough day yesterday, where she was not oxygenating very well. The ICU doctors have assured us that this is typical with Acute Respiratory Distress Syndrome (ARDS).... there are good days and there are not so good days. Yesterday was one of those not so good days.
Today, she was oxygenating much better. They are discounting the intravenous TPN nutrition because the tube feeding directly into her digestive tract is working well. Her kidney function continues to improve, and her blood pressure was stable today. Her white blood cell count and temp remain normal. They hope to continue to give her diuretics to reduce her fluid retention over the next few days. She will also have a tracheotomy early next week. This is a good thing. The trach is much more comfortable for the patient, and many patients are able to get off the ventilator faster with a trach. The trach is not permanent, and heals within 5 days after it is removed.
On a different front, many of you know that my dad has been having some issues with his heart. He put off an angiocardiogram for the last few weeks because of the situation with mom. He had the angiocardiogram today, and the doctor has determined that he needs a triple bypass surgery. Because of the seriousness of his situation, he is going to remain in the hospital until they do the surgery on Monday. He is at John Muir hospital in Walnut Creek in the Cardiac Care Unit.
I realize all of this sounds unbelievable.... and Todd, Barry and I would definitely agree with you. We are trying to keep our spirits up and take just one day at a time. We appreciate all the support and prayers.... keep them coming.
Heidi, Todd and Barry
April 15, 2002
June - Day 18 in ICU / Jim - Day 1 in ICU
Dear Friends and Family -
Well, today was one of those days that you would never imagine.... visiting both parents in ICU, at different hospitals, in the same day.
Dad’s surgery went exactly as planned, with no surprises. Todd and I spoke with the surgeon following the 5-hour operation, and he said dad did very well. He is now recovering in the ICU unit at John Muir (this is standard for an open heart patient). They expect that he will be moved to a different unit in the next 24 hours or so, and will most likely spend 5-7 days in the hospital.
Mom had a couple of rough days with her oxygenation, but she seems to be more stable today. The tracheotomy is now scheduled for tomorrow (Tuesday). She is still heavily sedated and not responsive. They have told us that there are no long-term effects from the heavy sedation. Her kidney function is normal, her white blood cell count is normal, her temp is normal and her digestive tract is working. They continue to aggressively "take off" fluid with diuretics, and her rash is almost completely healed. The primary concern continues to be her battle with Acute Respiratory Distress Syndrome (ARDS).
We greatly appreciate all the support that we have received during this unbelievable roller coaster ride. It is very comforting to know that there are so many people that care so much for our family. Thanks...and keep those positive thoughts and prayers coming.
Heidi, Todd and Barry
April 18, 2002
Dear friends & family --
First an update on dad.... he is recovering well from his surgery. The doctors are pleased with his progress, and we expect that he may be able to go home over the weekend. He is quite tired and sore, but has been up walking around a few times a day. His spirits are pretty good, all things considered.
Mom is doing slightly better. Her oxygenation has improved a little over the last couple of days, and the doctor indicated that her chest x-rays looked better today. They are working hard to improve her nutritional balance...the "food" that she is receiving directly into her digestive systems was adjusted by the nutritionist today. The hope is that improving her nutritional status will help her body to heal her lungs. The doctors seem encouraged, but they continue to remind us that it is a slow process. Her tracheotomy has been rescheduled for tomorrow (Friday). She is still heavily sedated, but has had some brief periods where she opens her eyes and is able to respond (mostly with eye blinks and very small head nods).
Again, thanks for all of your thoughts and prayers.
Heidi, Barry & Todd
April 22, 2002
Dear Friends and Family -
Mom's condition has not changed dramatically in the last few days. The good news is that her oxygenation has been fairly stable, and they have begun to step her down on her ventilator settings.... very, very, very slowly. The bad news is that she has struggled with a slight fever and an elevated white blood cell count for the last 2 days. They did a CT scan this afternoon of her abdomen, and it was clear. We were all very relieved that they did not find any additional abscesses. They did identify a small amount of fluid around her heart, and they plan to do an echocardiogram tomorrow to check that out. Her heart is functioning well, but they want to identify what the fluid is. As far as infection, they have been taking cultures, and so far nothing has "grown out." This is good. We continue to try and be patient...but we are now going on Day 26 in the ICU.
Dad is doing very well. He was released from the hospital on Saturday, and was able to go to UCSF to see Mom on Sunday. Boy, were the ICU nurses surprised to see him only 6 days after open-heart surgery. We keep encouraging him to "take it slow"...and he insists that he doesn't need a "nursemaid." Yes, he is a little stubborn and grumpy...but, we think that is good sign! : )
Again, thank you for all of your support, good wishes and prayers.... keep them coming.
April 26, 2002
Dear Family and Friends -
Mom has had a couple of good days. She is oxygenating a little better, and they have been able to cut back slightly on the sedatives. This means that she has been more alert and responsive.... more hand squeezes, more head nods, more eye blinks, and even a few smiles. She has been able to tolerate the diuretics, so she has been able to shed a good portion of the excess fluid. Today, she was able to be in a more upright position, without any discomfort. It was great to see her partially sitting up today, with her eyes wide open. We hope this means we have finally turned a corner.
My dad is continuing to recover nicely. In fact, he wanted to add some comments to the update ----
"Thank you for all of you support, good thoughts, prayers and love. I received my birthday present from June today (a few days early)....a hand squeeze, a smile and a kiss. It's the best birthday present ever!"
Keep those positive thoughts and prayers coming. Thanks for all the support.
May 2, 2002
Dear Friends and Family -
The last 24 hours have been a complete roller coaster for us. Late last night my mom's condition worsened drastically, and she was having severe difficulty oxygenating. This came as a complete surprise to all of us because she was doing terrific earlier in the evening. Todd was at the hospital in the late afternoon on Wednesday, and Mom was alert, responsive and oxygenating well.
Based on mom's critical condition last night, the ICU team made a decision to insert a chest tube into her right lung to drain fluid that had been building up. The hope was that this would improve her ability to oxygenate. Thankfully, they were right. The team drained 1.5 liters of fluid from her right lung at about 1:30am, and her oxygenation status improved significantly. Based on her positive response in draining her right lung, the ICU team drained her left lung of approx. 750 ml of fluid about 10:00am this morning.
The results have been dramatic. They have been able to bring down the ventilator settings to the lowest point they have been since she was first put on the ventilator back in late March. For those of you who are familiar with the vent settings...she was at 50% O2, 8 PEEP, and 18/min this evening when I left the hospital. This is compared to 70% O2, 14 PEEP and 20/min, which is where she was prior to her condition deteriorating late last night. This is major progress. They had her more sedated today, but she was still able to squeeze my hand and nod her head. The tubes in her chest are causing her some discomfort, but thankfully, they are temporary.
We are hoping for continued improvements in the days ahead. We are all looking forward to the day that mom no longer needs to rely on the ventilator. We continue to remind ourselves that there will be good days and bad days...and I think we just had a very bad day and a very good day, all in the same 24-hour period.
Again, thanks for all of your support.
May 6, 2002
Dear Friends & Family --
Mom is still in ICU and still on the ventilator....but she is continuing to make good progress. Over the weekend they were able to step her down on her vent settings (50% O2; 5 PEEP), and she is now initiating her breathing on her own. The vent is no longer doing the breathing for her....she is doing it herself. If she continues to make improvements and continues to be stable, they may be able to take her off the ventilator by the end of the week. She would then be on what is called a "trach-collar" that provides some oxygen support, but that doesn't do the breathing for her. This is good news.
Mom did develop a fever and had an elevated white blood cell count over the last few days. However, a CT scan did not show any abscesses in her abdomen, and the "cultures" have not grown anything. The fever could be due to pneumonia or an infection in one of the "lines" that they have going into her body. The doctors have put her on a general course of antibiotics, and that appears to be working.
The doctors have also begun "weaning" mom off the various sedatives. This is a slow process....they say it may take up to 14 days for her to be off the sedatives completely. The reduction in sedatives means that she is more aware of what is going on around her and has periods that she is somewhat alert. She is unable to talk because of the tracheotomy, but she can communicate via small head nods and facial expressions.
All in all....we have had a few good days in a row. Mom still has a long way to go...but she is making great progress. We are hoping that we can all celebrate Mothers Day without the ventilator!
Dad is continuing to heal and recover. His doctor has assured him that all the aches and pains he has are "normal" following open-heart surgery.
Thanks for all of the support,
May 12, 2002
Dear Friends & Family -
Mom is still in ICU and still on the ventilator. They continue to "ween" her very slowly from the sedatives, and she is becoming more aware and alert. This is good news and bad news. The good news is that she has longer periods that she is awake and alert, and is more responsive. The bad news is that she is becoming more aware of what is going on, and is increasingly uncomfortable and anxious.
During this past week, they have taken her off the ventilator for short periods of time. However, they continue to support her with the ventilator because she has unfortunately developed pneumonia. There is good news and bad news with this as well. The good news is that they found what has been causing her fever and elevated white blood cell count and they are able to treat it with the appropriate antibiotics. The bad news is that it is a setback in her recovery process.
The past week has brought a few lighthearted moments as well. On Thursday afternoon while Dad and I were visiting, they took mom off the ventilator and attached a valve to her tracheotomy that allows her to talk. After not using her vocal cords for such a long period of time, they were out of shape. She was able to get out a whisper of "hello"...and a few other very faint mumbles. Then, just as they were going to put her back on the ventilator...she blurted out, clear as a bell...."I NEED TO GO HOME." That was it. What more was there to say? Dad and I responded with a resounding.... "Yes, we need you home!"
Then yesterday during my visit, mom was uncomfortable and was trying to communicate to me what was bothering her....and I was clearly NOT understanding. She would point, nod her head, try and mouth words....but I just couldn't get it. I kept trying...is it this? is it that? is it the other thing?...on and on and on. Finally, instead of getting more frustrated, she let out a smile and a little chuckle (almost a laugh). She was able to find some humor out of my struggling to understand what she was saying!! I finally did figure out what she was trying to say...but the process provided us with a brief moment of levity.
Dad begins his cardiac rehabilitation program next week. He continues to recover well.
Thanks again for you support, your thoughts and prayers. Please keep them coming.
PS - Mom can receive cards at the hospital. If you'd like to send a card, the address is:
June Mercer - Patient
c/o USCF Medical Center - 9 ICU
505 Parnassus Ave.
San Francisco, CA 94143-0570
May 18, 2002
Dear Friends and Family -
Still in ICU...still receiving some support from the vent.
Mom has made progress over the last few days. She has been off the vent, on a "trach collar" for periods up to 7+ hours. The "trach collar" provides her some oxygen support, but she does the rest on her own. This is good news.
They have been able to bring down her sedation-level, and have even eliminated one of the 3 sedatives completely. Her blood pressure has been stable...it still fluctuates pretty widely depending on whether she is awake or asleep. But, it remains in a safe range, and she has not had to have any additional medication to control it. Her fever and white blood cell count are both down...the antibiotics appear to be doing the trick on the pneumonia. The chest tubes are still in, but they expect to remove them in the next few days.
She is having more periods of time where she is awake and responsive, but she is experiencing quite a bit of anxiety (after all that she has been through, who wouldn't?!). The ICU staff has explained to us that it takes a while for ICU patients like mom to come out of the "haze" of the deep sedation, and they very slowly pull together the puzzle pieces. This is a process that is often difficult for the patient and the family members. It is especially difficult because she still can't talk with us...except for brief periods where they are able to attach valve to her trach to allow her to talk. We are hoping that they are able to put on the "talking valve" more and more over the coming days.
The ICU doctors are encouraged with moms progress...and although she is not yet ready to transition out of ICU, they are hopeful that mom will continue to make good progress in the next week or two. However, they have prepared us for additional setbacks. Infections and pneumonias are part of life in the ICU, and she could develop something else to slow her recovery. We are hoping and praying that she continues to make progress, and that we don't have to face any additional setbacks.
Dad is doing well...he even went out on the golf course yesterday with some friends. He said he just drove around in the cart, and chipped in a few shots....I'm not sure whether we should believe him! He is encouraged with the progress that mom is making...but we all understand that we still have a very long road ahead of us.
Thanks for all of your support.
May 22, 2002
Dear Family & Friends ---
Mom is still in ICU....but off the ventilator! The ventilator has not been on for almost 6 full days. Mom has been on the "trach collar" receiving some supplemental oxygen, but breathing completely on her own. We are all thrilled to have the ventilator turned off, unplugged, and pushed back in the corner of her room with a cover on!
Mom has made lots of progress in the last few days. She has been able to sit up in a chair for short periods of time, and she has even been able to enjoy the view from the 9th floor ICU overlooking Golden Gate park and the Bay. She is almost completely off all of the sedatives, and is very alert and sharp. They removed one of the chest tubes on Monday, and removed the other chest tube today. The doctors and nurses are amazed with her progress.
She is still unable to talk without the trach valve, but she has gotten very good at pointing & gesturing...and we have gotten better at "lip-reading." She was able to have the trach valve on for a couple hours this afternoon during Todd's visit, and they were able to really catch up. Mom is still struggling to completely understand everything that she has been through over the last couple of months. She has been working with Physical Therapy over the last few days, but she is very weak. It is going to take a long time for her to build back her strength.
We are hoping that they will transfer mom out of the ICU in the next few days. She will most likely spend some time in the "step-down unit" and then go out to a regular hospital floor. Over the next week or so, we should be able have a better idea of what the next steps may be. This could include some more time at UCSF, or a brief stay at an Acute Rehabilitation Facility.
We are all so excited about the progress that Mom has made...it is unbelievable how far she has come in the last few days. Many of the nurses that have taken care of her over the past few months, have come by to "meet her" and to let her know how great she is doing. We feel very lucky that mom has gotten such great care .... the ICU staff at UCSF has really been wonderful.
Thank you for all of the cards & letters....they really do seem to boost mom's spirits. We appreciate the amazing support that we have received during this very difficult time. We still have a long road ahead, but things are finally headed in the right direction!!! : )
May 27, 2002
I am thrilled to report that Mom is no longer in ICU!!
After more than 60 days, mom has finally been transferred out of the ICU unit at UCSF. She was transferred yesterday afternoon to a "step-down" unit, where the level of care is somewhere between the ICU, and a regular hospital floor.
The biggest challenge over the last few days has been her battle with nausea. They have finally found a drug that is helping her. The doctors are not exactly sure what has been causing the nausea....it could be a side effect from the antibiotic that she is taking (septra), it could be a result of the weaning from the sedatives, it could be from the tube feedings into her digestive tract. Regardless, they have been able to control it for the last 24 hours, and she is much more comfortable.
Mom still has the trach, however, they have reduced the size of the trach opening. This allows her to talk without the "talking valve." If she continues to improve, they may remove the trach all together in the next few days. They have told us that the trach opening heals very quickly, and she will be left with just a small scar.
She has been working with the Physical Therapist...and is making good progress. She starts a more aggressive Physical and Occupational Therapy program tomorrow. They will focus on improving her mobility and her conditioning. At this point, she can sit up, unsupported, for a few minutes, but is unable to stand without assistance. Her control and ability to move her arms and legs has improved substantially over the last few days...however, it will be awhile before we see her walking down the hallway.
Mom's spirits were very good this afternoon. In fact, I knew she was feeling better the minute I walked in the room. She began by telling me where her things needed to go. The pictures I had brought needed to go up on the wall. Her hairbrush and lip balm needed to be put by her bedside. The toothpaste and lotion needed to be on the table, etc...!! I was thrilled to be "ordered" around!! : )
We talked for a long time about what has happened to her over the past 2 months. We are thankful that she remembers very little about her experiences in ICU. Also, she is not yet aware of my dad's open heart surgery...we are hoping that she can continue to make more progress in her own recovery before we share that news with her.
I hope to send additional good news in the coming days. Thanks for all of the amazing support!
June 2, 2002
Dear Family & Friends --
Mom has made amazing progress over the last week. The trach was removed completely a few days ago, and it is almost completely healed....it is just amazing how the human body rebuilds itself. Mom is no longer connected to anything....no oxygen, no feeding tubes, no central line, no "A" line, no IVs, no catheter...no nothing! She is eating real food...turkey sandwiches, bagels, fruit, mac & cheese, veggies. Her appetite is coming back very slowly, but she continues to eat a little more each day.
She has been working daily with Physical and Occupational Therapy, and is making steady progress. She is able to do a little more each day...but it is going to be a slow process. She has been out of bed in a chair, or a wheelchair, for longer periods of time, and she continues to increase her strength and mobility. The good news is that she is somewhat impatient with her progress...and that is motivating her to focus and work hard at her rehabilitation.
The most exciting news is that the plan is to transfer her to Acute Rehab Facility at John Muir Medical Center tomorrow! We are all thrilled that she is well enough to leave UCSF. Mom received the best care possible at UCSF....the doctors, the nurses, the ICU staff, and the Respiratory Therapists literally saved her life. We are all extremely thankful for all the people at UCSF that cared for mom.... but, after more than 10 weeks, we are more than ready to have her closer to home!
Mom's spirits are good, although she is little nervous about the hard work that is ahead in rehab. We are hopeful that her stay at the Acute Rehab Facility will be no more than a few weeks...but if I have learned anything from this experience, it is that "time will tell," and that we all need to be more patient. : )
Another development from last week---my dad shared his "news" about his surgery with my mom. She handled it very well, and seemed somewhat relieved, because she sensed that something was wrong. We all feel much better that we no longer have to keep this a secret. Mom and Dad are planning to do their "rehab" together....Dad at the Cardiac Rehab Center, and Mom at the Acute Rehab Center.
We have been slowly sharing all of the wonderful cards and letters that have been received over the last few months. Mom is deeply touched by the amazing support that we have all received. Thank you for helping us during this very difficult time...your positive thoughts and prayers are clearly paying off!
I will continue to keep you posted on mom's progress.