|
Madeline & Jim left Thursday morning for a quick 2 day trip back to Pittsburgh for some follow-up appointments and tests. These trips will be part of their new routine every other month for the next two years. After that, they will continue to make the trips with less frequency.
Unfortunately, Madeline fell in the Philadelphia airport during a layover on the way to Pittsburgh. Ever the trooper, she boarded the plane to continue the journey. By the time the plane landed, Mad was unable to put any weight on her left leg. However, she continued with her pulmonary appointments (which went well!) before heading to the ER where x-rays confirmed that she had broken her left hip. On Friday morning, rather than undergoing a bronchoscopy, as previously scheduled to test for rejection, Madeline had a partial hip replacement at UPMC. Saturday she she was able to move to a chair and today she took a few steps with a walker. The bronchoscopy is now scheduled for Tuesday and Madeline will have inpatient rehabilitation for about a week or two at UPMC -- back to her old stomping grounds where she spent a week and a half in February. As always, Madeline continues to have a positive attitude and is confident that she'll be back home in no time at all! She's ready to meet her granddaughter-- who could arrive any day now -- and celebrate her neice's wedding on the 17th. All of your thoughts and prayers have helped in the past and we know they'll help on this new, unexpected journey!
26 Comments
100 days. It seems like every time you turn on the TV lately, you hear, “100 Days.” It’s been 100 Days since Madeline went into the OR for her transplant. 99 days since she left that OR. It’s been 1 week since she left Pittsburgh. One week since she’s been home. It’s been 100 days, but it's been the little things. As Madeline said this week, “When you return to the place where you lived for so long, you realize how sick you were.” Madeline no longer needs to have a chair waiting half way between her favorite chair and the bathroom and the bed and the bathroom so she can stop, sit, and catch her breath (keep in mind, the total distance from the bed or chair to the bathroom was about 20 feet -- and that was with oxygen!) For the first time in over 3 years, she’s been able to walk to the mailbox. As her friends come to visit and welcome her home, they remark about how she greets them at the door, rather than just telling them to come in as she sits in her chair. She has walked through Stop & Shop, she has walked down the hall to the doctor’s office, she’s enjoyed lunches with good friends, and she has had her 3 year old grandson, Matty, ask her to play hide and seek -- all things which most people would have normally taken for granted, but we now fully appreciate. Yesterday Jim and Mad were able to go to their grandson Danny’s lacrosse game. Today they returned to their Sunday routine -- 11:00 Mass followed by their “Lunch Bunch” at Twin Willows. Their friends were overjoyed to see them and were ready to welcome them home. Mad and Jim are home!!!  Last week, Madeline had an appointment with her transplant pulmonologist who felt confident that Madeline's stomach tube could be removed. She advised that the transplant surgeon would have to give his approval as well, but that once the tube was gone, Jim and Mad would be free to return home to Rhode Island. They will have frequent -- but MUCH shorter -- return trips to Pittsburgh as she will continue to be followed by her UPMC transplant team for the rest of her life. Mad and Jim anxiously awaited for the call from the surgeon which finally came Wednesday. On Friday morning -- exactly 3 months post-transplant -- Madeline returned to UPMC to have her stomach tube removed. Everyone there continues to be amazed by her progress. Friday night, Jim and Mad enjoyed a celebratory dinner with the Peterson family. Barb & Terry Peterson were kind enough to open their home and their incredibly generous hearts to Jim and Mad over these past ten months. Barb's well-honed nursing skills were also put to good use as she took wonderful care of her "roommate." Once probably best described as distant relatives, the Petersons are now dear friends. Their support during this time was truly immeasurable. Saturday morning Madeline enjoyed a little more cake for breakfast before she and Jim said their goodbyes and hit the road. After driving about 6 hours, Mad and Jim stopped for the night in New York. They had dinner at a little Italian restaurant and were surprised to notice the sign above their table.  Madeline and Jim we're excited on Sunday morning to finally drive the last few hours toward Rhode Island. They spent a wonderfully happy afternoon with their family and are overjoyed to finally be home!!! Madeline has made this whole experience look easy - a piece of cake - but we all know that none of it was as easy as she made it appear. It’s fitting that Mad’s first food in 67 days was a piece of cake.  Monday morning the pig tail tube which had been draining the pneumothorax was removed. Later in the day, Madeline underwent a barium swallow test which she passed with flying colors. As Jim and Mad were waiting for the discharge late Tuesday morning, Madeline's feeding tube became clogged. So before being discharged, she had to have the feeding tube replaced once again. Madeline has officially graduated to a “soft diet” but her meds are still being administered through the tube. Shortly after arriving at their home away from home, Madeline thoroughly enjoyed a piece of cake and some pudding. Today was the first day in more than three and a half years that Madeline was able to walk around the house without any tubes -- no oxygen, no feeding bags. Her day was blessedly normal -- pastry and coffee for breakfast, mac and cheese for lunch and beef stew for dinner. She was even excited to report that she switched the laundry from the washer to the dryer -- something she hasn't done since arriving in Pittsburgh in July. She topped the day off with a long-awaited, celebratory glass of Chardonnay. The last few weeks have been fairly uneventful without much to report. With the exception of doctors appointments and a few drives around the area, Madeline has been mostly homebound. However, the recent routine was a bit different this week. During a weekly blood test, it was determined that Madeline’s liver enzymes were slightly elevated. On Wednesday, Madeline met with a hepatologist who concluded that her liver does not appear to be compromised and that Madeline’s medications may have caused the higher liver enzymes. Her medical team will be monitoring this situation closely.
Thursday was an appointment with the transplant pulmonologist which included additional blood work, a pulmonary function test (PFT) and a chest x-ray. The x-ray showed a pneumothorax (air pocket) above the right lung. If left untreated, a pneumothroax could cause the lung to collapse. The timing was fortuitous as Madeline had a lung biopsy scheduled for Friday, which could have exacerbated the pneumothorax had it remained undetected. Madeline was immediately sent for a CT scan which was then reviewed with her transplant surgeon. Madeline was then readmitted to UPMC. On Friday, Madeline underwent a procedure to insert a "pig tail tube" into her upper chest to drain the air. Later in the day she was brought to another OR to have a pulmonoscopy and lung biopsy to check for signs of rejection. Another chest x-ray was performed on Saturday morning. The good news is that the pneumothorax is diminishing. The even better news is that the biopsy continues to show no signs of rejection. Hopefully tomorrow will be a busy day -- remove the “pig tail”, have a barium swallow test and be discharged once again. If the barium swallow is successful, Madeline’s medical team will allow her to begin eating and drinking soft foods -- the first step toward the removal of her feeding tube. Madeline’s last meal of veal parm on January 19th is a distant memory, but she is dreaming of ice cream and an eventual chardonnay, which are not far away! Jim and Mad are still hoping to be home in Rhode Island in May and can’t wait to see the family and friends who continue to support them each day. The rigors of a ten days in rehab prepared Madeline for life with her new lungs. Some therapy activities towards the end of Madeline’s stay included dancing to “Run Around Sue”, practicing getting in and out of cars, as well as performing household tasks such as filling pitchers and carrying them across a room and making toast. Unfortunately, Mad won’t be using the latter skills any time soon as she is still receiving nutrition solely through her feeding tube.  On Monday, February 27th, after 38 days at the University of Pittsburgh Medical Center, Madeline was finally discharged. Early that morning, she sent the picture above of her countdown board to Jim, Colleen, and Mike. Michael noted that Madeline’s reflection on the board made it look like she was holding her hands up in victory. Madeline’s “brother like no other” and “SIL”, Walter and Janet, arrived Tuesday for a week-long visit. As always, Jim and Mad are thrilled to have familiar faces with them in their home away from home. Around 3 am Wednesday morning, Jim and Mad were awoken by the beeping of Madeline’s feeding tube alerting them that the tube was clogged. Despite efforts by the visiting nurse, Madeline ended up at the UPMC ER Wednesday afternoon. The ER staff was also unsuccessful in opening the line, so Mad was admitted there at about 7 that night. The following morning her transplant surgeon replaced the line and took out a few of the staples that remain from her surgery. Walter and Janet visited Thursday just before Madeline’s second discharge and were able to meet some of the transplant team. Friday was another cause for celebration - Jim’s 69th birthday. This year, he could even have candles on his cake! Colleen happened to call just as the party was getting started and was able to join in via Mad’s cell phone. Another cause for celebration on Friday was when the medical supply company collected the 3 10 liter oxygen concentrators that Madeline used in the house as well as the 33 oxygen tanks that Madeline used when she left the house. Prior to her transplant, the company made twice weekly visits to swap out empty tanks for full ones.  Sunday was Madeline’s first official public outing. Jim, Mad, Walter, and Janet ventured out to the Heinz History Center. Madeline has a mask that she uses while out in public, but luckily the crowds were minimal, and Mad was able to take off her mask for a few photo opportunities in the museum. The week ahead is a busy one with appointments everyday - including the visiting nurse for her feeding tube, the transplant pulmonologist, and the transplant surgeon. While Madeline still tires easily, she is able to do many things that she hasn’t been able to do in a very long time!
Everyone on Madeline’s medical team continues to comment on how impressed they are with her progress, positive attitude and determination. Earlier this week, we received confirmation that Mad was, in fact, the oldest scleroderma patient that has ever been transplanted at UPMC. Knowing how concerned transplant centers are with their ratings (which are based on patient survival rates over time), this speaks volumes as to the transplant team’s confidence in Madeline as a strong recipient candidate as well as her enthusiasm and strength. On Monday, it was determined that Madeline’s trach wound was completely healed. She was happy to be rid of the gauze and tape that had been pulling at her throat. Madeline also “graduated” from speech therapy and was permitted to add swabs of apple juice to her repertoire of dumdum lollipops and swabs of ice water.  In Jim’s father’s later years, each time he was hospitalized he was always eager to know “the plan.” Every Tuesday morning, the inpatient rehab team meets to plan for the discharge of all of their patients. We were all eagerly awaiting “the plan” and had been cautiously optimistic that Madeline would be released on Friday. However, due to the fact that she will be coming home with a PEG tube, the team decided to wait to discharge her until Monday so that visiting nurses will be better able to coordinate her care. In the meantime, Madeline has been keeping very busy with her therapy sessions. Without supplemental oxygen, she has been moving farther and faster than she has in years even with oxygen. Her therapists have taken advantage of the unusual temperatures which have been in the mid- to high- sixties this week. Madeline had a chance to go outside again Tuesday during physical therapy. She walked from the main entrance of the building (near the overhang in the bottom left corner of the picture) to the flagpole area and then across the driveway and slightly uphill to the other sitting area on the far side.  After all of that exercise, Madeline earned her “green card”. This indicates that she is now able to freely move around her room unsupervised. The videos below document her first unassisted trip to the restroom on Tuesday afternoon. Each time her medical team observes her, they note that she receives “bonus points” for her attention to the small details as she moves about her room. Madeline’s transplant team continues to mention how “beautiful” and “young” her lungs are. At this time, we are unable to know anything about her donor, but are so grateful to the donor and the donor's family for the incredible gift Madeline has been given. If you haven't already, please consider becoming a donor and giving the gift of life.
Another milestone was met on Monday when Madeline’s trach was removed. That area of her throat is now covered by some gauze while the incision heals. For the time being, she has been instructed to apply pressure to the area with her fingers while speaking. This prevents air from leaking out and speeds up the healing process. It is expected that the incision should be fully closed within the next few days. Madeline had hoped to be moved to the inpatient rehab program at UPMC on Monday. Unfortunately, due to a lack of beds on that wing, her move didn’t occur until Thursday. Since then she has been very busy with various therapies. A normal day consists of a physical therapy session, two occupational therapy sessions and a speech therapy session. Speech therapy generally lasts about 15 minutes, but each of the other 3 sessions last about an hour each. When Madeline first met with the therapists in the rehab unit, they asked what she wanted to be able to do. Madeline, unsurprisingly, said she wants to be able to walk on the beach. To help her meet that goal, Madeline walks on foam boards which replicate the uneven surfaces of a sandy beach. This is included with a number of other exercises to strengthen her body. She has taken multiple “six minute walks” over the past few days. Madeline says they are slow walks, but this is a huge accomplishment especially considering she has not been able to sustain a six minute walk WITH the use of oxygen for over a year. During her afternoon OT session today, the therapists took advantage of the beautiful, unseasonably warm weather and took Madeline outside. She was thrilled to get some fresh air for the first time in over four weeks. Madeline’s favorite therapy is her speech therapy sessions. During that time she is working on swallowing so that she can eventually have her PEG tube removed and begin eating and drinking real food. For the time being, the lollipops that she receives during speech are one of the highlights of her day. Madeline has also been delighted to have multiple visitors this week. Jim’s brother, Tim, was in Pittsburgh on Tuesday for work and stopped by UPMC. Colleen arrived yesterday for the week, and the Petersons have also been in to visit and spread some cheer. Yesterday was a milestone day in Madeline’s recovery. She has been completely off the ventilator since Sunday, so the vent was officially taken out of her room in the morning. Another piece of equipment is gone, as the final drainage tube was removed from her chest. Madeline’s trach tube was also replaced with a smaller trach tube. This smaller tube is now attached to a speaking valve that allows her to talk! While her voice is still a little weak, she sounds very much like her old self. Madeline also received the wonderful news that her biopsy report came back favorable with no signs of rejection!
While those advancements alone are amazing, there are more exciting next steps on the horizon. On Monday, Madeline will be moved from her current room in the main building of the UPMC campus to a rehabilitation unit in another connected building. When Madeline moves, she will be leaving the hospital gowns behind and trading them in for her own comfortable clothes. She expects to be in the rehab unit for about the next two weeks. During that time, Madeline will be spending 4 to 5 hours per day out of her room for rehab. She hopes to have the feeding tube and the trach tube removed within the next week. Madeline and her new lungs may be in Pittsburgh, but her heart is still in New England. She cheered the Pats on to their fifth Super Bowl title from her room in the CTICU.  Today she celebrated her “release” from intensive care. Since the last post, Madeline was off the vent from Thursday morning until Saturday morning. Friday’s big accomplishment was that Madeline walked vent free from her room to the nurses’ station (about 40 feet away). She was accompanied by a nurse on either side of her and one following behind pushing her chair and all of her various IV lines, chest and stomach tubes. When she got to the nurses’ station, Madeline rested for a bit and then made the return journey. After all that exercise, Madeline went back on the ventilator Saturday morning, but has now been vent-free since Sunday morning.
Madeline has added a few new exercises to her repertoire. The speech pathologist has given her some swallowing exercises to tighten muscles in her larynx and esophagus. Eventually, Madeline will be given a narrower tube in her trach to give her larynx more space to work. Jim reports that now when Madeline talks, she is producing small sounds -- air, no voice yet! -- which is making her more intelligible. Tomorrow the medical team will biopsy Madeline’s new lungs to test for any signs of rejection. There is a possibility that she may also have the two remaining chest tubes removed. It’s hard to believe how much improvement she has made in just two weeks! |
Keeping CurrentAs often as possible, we'll try to update this page to let you know how Madeline is doing and where she is in her fight for new lungs. Visit often! Archives
August 2018
Categories |
RSS Feed