Yesterday morning Madeline went into surgery to get a feeding tube inserted directly through her abdomen to her stomach. With this surgery, Mad is now free of tubes on her face and she is much more comfortable. Once the anesthesia wore off, Madeline spent the day sitting up in her chair while still on the vent.
Madeline experienced some pain today in her side due to her new stomach tube, so she had another day without walking. But as Jim reports, she was a “happy girl” to have her hair washed today! Madeline’s ventilator was turned off at 6:30 this morning. When the vent is off, she receives a small amount of oxygen through her trach. If Madeline is able to stay off of the ventilator through the night, she may get to graduate from the CTICU before the end of the day!
Tomorrow, Madeline’s medical team will perform a lung biopsy through her trach to check for any signs of rejection. We’re hoping and praying to have good news to share!
Today was a quiet day. The surgical team performed two other lung transplants today, so the procedure to insert Madeline's feeding tube was postponed once again until tomorrow. The respiratory team did another breathing trial, but after Madeline's big day yesterday, they opted to keep her on the vent to give her new lungs a bit of a rest today.
For the most part, Madeline and Jim spent the day reading, with Madeline catching up on some of the social media she has missed over the last week. Jim reports that Madeline's motor skills continue to improve, which has been very helpful in communicating. Since he has difficulty reading her lips, Madeline is mostly communicating with him in writing.
Even on days like today where there is not a lot to report, it is amazing to think about the progress Madeline has made in such a short time.
Madeline was hoping to trade her nasal feeding tube for a stomach feeding tube today. Not because of the surgery it would entail, but because she was really looking forward to getting the tube out of her nose. Unfortunately, the surgery was postponed until tomorrow and she gained an additional tube in her other nostril until that surgery takes place. Her stomach has been distended for the past few days and her medical team has been draining her stomach to remedy that situation.
However, there were many positive developments today. Madeline’s motor skills improved dramatically overnight. Her writing on the Magna Doodle is now very legible and she was able to independently use some technology. In fact, she did not need to have your comments read to her because she had logged into the blog and Facebook and had read them herself! In addition, during her morning physical therapy session, Madeline walked from her chair to the door (about a 5 foot distance) and back twice, which is incredible considering just a few days ago she was still bedridden and almost completely sedated. Later, when she left the room for a CT scan, she walked from her chair out to the stretcher in the hallway. But the best news of all is that they tried another breathing trial this morning. Madeline’s new lungs kept her off the ventilator for about eight and a half hours today! This is an amazing improvement over her prior trials which lasted no longer than ten minutes.
Hopefully tomorrow she will be rid of both nasal tubes and will be MUCH more comfortable!
It has become one of those family stories that will never die. Ten years ago -- just before Mike and Megan's wedding -- when Madeline’s scleroderma started to impact her life, her rheumatologist asked her what she wanted to be able to do. Madeline’s response? “I want to dance on tables.” While (as far as we know), dancing on tables was not part of her regular repertoire, it was an answer that gave a glimpse at her personality. She doesn’t take herself too seriously and wants to enjoy life to it’s fullest. Over Thanksgiving weekend, Madeline, Jim and Colleen saw this sign and knew they couldn’t leave it in the shop. While more of a Chardonnay girl than a Champagne girl, this fit Madeline to a T. It’s been sitting in her closet until yesterday when Jim brought it to decorate her hospital room. The sign has proven to be a fun-loving way to show Madeline’s caregivers her personality, even if she can’t technically speak for herself.
This morning was fairly quiet. Madeline had been in bed since about 5:00 or so yesterday afternoon. She was uncomfortable and eager to switch positions and was finally moved her out of bed and into a chair at about 1:00 this afternoon. It didn’t take long for Madeline to spring to life. Jim and Colleen started to show her webcams of Aruba -- one of the things that she has enjoyed while tied to a chair over the last couple of years. Next they knew, she was asking for her cell phone and calling her “Brother Like No Other” in Aruba. While Walter and Janet were on the phone, with Colleen lip reading Madeline’s side of the conversation, Jim’s cell phone rang. It was his brother Tom checking in from Florida. In a moment that would have made Madeline’s father’s head spin, Walter, Janet, Tom, Jim, Mad and Colleen were all on speakerphone talking to each other from Aruba, Florida and Pittsburgh!
Since it was the weekend, the hospital was fairly quiet and there weren’t as many teams coming in and out of Madeline’s room, she created her own therapies. She used a Magna Doodle a few times (Thank you, Barb!) to communicate. Since her motor skills aren’t quite what they were a week ago, it is still hard to read her writing, but by watching her form the letters, it was easy to understand her message.
Madeline continued to experience a dry mouth, but her nurse was more liberal today with allowing her to use swabs to wet her mouth. They are very adamant that she not swallow yet, as they do not want her to aspirate into her new lungs. A highpoint of Madeline's day came when the nurse brought her a mixture of ginger ale and cranberry juice into which she could dip her swab rather than just ice water. To look at Madeline, you would have thought she was enjoying one of her much-loved Cosmos!
When her nurse mentioned the prospect of starting to walk, Madeline nearly jumped at the idea. Because the proper teams to support this new endeavour were not in place over the weekend, instead Madeline marched in place for a short time while moving from her bed to chair and chair to bed. So, while she’s not quite ready to dance on tables, she’s almost ready to march on them!
We know that each day of this journey is going to have its ups and downs. Today was no different.
Late last night, Madeline was moved from her bed in one wing of the CTICU to a more private room on the other CTICU wing. This wing is for patients who are slightly less critical, which is a good sign. Unfortunately, her new room didn’t help her get much rest overnight, so she was a bit sleepy when Jim, Colleen and Mike arrived. She spent much of the morning sitting up in her chair (sitting in the chair allows her lungs to expand more than lying in the bed) with the lights off and easy listening music on while getting some short bouts of sleep.
In addition to being tired, Madeline was feeling nauseated on and off throughout the day. She also desperately wanted to have some water to drink, but had to settle for a few small swabs of her mouth.
On the positive side, she was better able to communicate without the breathing tube in her mouth. Now her family just needs to get better at lip reading and charades! Some messages were easier to understand than others. Mike headed home to RI midday with strict orders to “Give my boys great big hugs!”
Another positive is that Madeline is demonstrating more and more spontaneous movements. Throughout the day she would raise her arms towards her head and stretch her fingers just because she could. She was also moving her legs -- at one point crossing them while lying in bed.
The best news of the day, however, came from a breathing trial. This breathing trial was the most successful one yet. Madeline was able to breathe on her own for 10 minutes without the vent! Towards the end of the ten minutes, Madeline was getting tired, so they put her back on the vent.
There had been discussion of trying to get Madeline to take some steps today, but that didn’t come to fruition. Maybe that will be a highlight for tomorrow.
Each day Madeline looks more and more like herself. She had a good morning, was very alert when Jim, Colleen, and Mike arrived, and smiled through her daily reading of all of your well-wishes. Her biggest issue today seemed to be discomfort caused by the breathing tube that’s been in place since Sunday. Her mouth was very dry, and while this is the most alert she’s been all week, she had difficulty communicating with the tube still in her mouth.
They tried more breathing trials this morning, which is where they turn off the ventilator to see if Madeline can breathe on her own. Madeline wasn’t quite ready to take breaths on her own yet, so she’ll probably be on the ventilator for at least a few more days.
Since she’ll be on the ventilator for a little while longer, they decided to perform a tracheostomy this afternoon. Instead of having a tube through her mouth, it now goes directly through her throat, which is at least a little more comfortable for her. The procedure only took about a half hour and was performed right in her room, but she was “out of it” for a little while afterwards. However, when she awoke, she looked even more like the Madeline we all know and love. Despite the challenging week and long road ahead, she had nothing but big smiles. She’s taking baby steps, but making progress every day.
We have been very pleased with Madeline's care at the University of Pittsburgh Medical Center. Many have told us that they are the best at what they do, and there is definite evidence to that point. On December 7, 2016, UPMC performed their 2000th lung transplant -- the first hospital in the nation to meet that landmark. Madeline's transplant surgeon reports that she is also one of the oldest scleroderma patients they have transplanted -- one of the main reasons we are here.
This morning Madeline is much more alert than she has been all week. We'll update today's progress later in the day.
Today Madeline had multiple attempts at breathing trials which didn’t go as well as we would have liked, so she is still on the ventilator and using a breathing tube. There are a few different things that could happen on the road to weaning her off the ventilator. One option is to wait and see if her breathing without the ventilator improves. Another option would be to go back into surgery and perform a tracheotomy. Basically, the trach would also be hooked up to the ventilator and would perform the same function as her current breathing tube. The downside is the surgery that a trach would entail, but the postive side would be greater comfort for Madeline and an increased ability to use her mouth. We have been told that most lung transplant patients require a trach so it’s not the worse thing in the world, but obviously we would prefer that she need to undergo as few procedures as possible.
There were many positive steps as well. Madeline is off the continuous IV drip of pain medication that was sedating her and is now receiving her pain meds intermittently. Because of this Madeline was more alert today than she has been all week. She also had four chest tubes removed, so hopefully she is more comfortable with only two drainage tubes -- one on each side of her chest. Most of the day was spent sitting up in a reclining chair with her legs elevated with Madeline still sleeping most of the day. But when she was awake, she got a workout!
In addition to the 4 breathing trials, Madeline also had sessions with the physical therapist and the occupational therapist. The PT had her bending her legs and even standing up for a minute or so! With the help of the occupational therapist, Madeline worked to put on a hospital gown. We were all impressed with Madeline’s core strength and her ability to sit up straight during this activity after lying down for almost a week.
We continue to share all of your messages with Madeline each day, so keep them coming!
Today was another good, but challenging day. Overnight Madeline was weaned off nitrous oxide which was being used to expand the vessels to her lungs and allow the oxygen to flow. The medical team also started to wean her off of the sedatives so she was a little more “with it” this morning when Jim, Colleen, and Mike arrived. Her eyes were still glossy and unfocused, but she was responsive as they read comments left on Facebook and the Mad For Life blog overnight. (Keep the positive thoughts coming!)
Around mid-morning, a physical therapy team transferred Madeline from her hospital bed to an armchair - today’s major accomplishment. While the nurses said she was strong and did well, it didn't necessarily look that way to the untrained eye. After being transferred, she was visibly in pain so they increased her IV meds to make her more comfortable. However, it made her drowsy again.
The big challenge is to find the fine line between giving her enough pain medication to make sure she’s comfortable, while lowering the amount of medication she receives to ensure that that she starts to regain control of her body. She’ll continue to have some level of pain for the foreseeable future since she currently has six tubes (three in each side) protruding into her chest cavity. But the goal for tomorrow is to find the right amount of medication in order to start weaning her off the ventilator. If Madeline can regain enough control of her body tomorrow, they’ll try turning off the ventilator to see if she can breathe on her own. They’ll do this a few times, lengthening the duration she breathes independently each instance. If Madeline proves that she can breathe on her own, they could remove the breathing tube tomorrow.
Removing the breathing tube would be a tremendous step forward for many reasons. One major reason is because it would allow Madeline to start communicating again and give her the ability to tell her nurses and the medical team why and when she’s uncomfortable. But it’ll also give her the ability to speak to her family, which Colleen and Mike are hoping will happen before they head back to Rhode Island on Friday or Saturday.
Madeline went into surgery late this morning to close the incisions in her chest. Her medical staff reports that the procedure went well. Shortly after she returned to her room in the CTICU, a team came to take a chest X-ray. Within minutes, the transplant pulmonologist came and reported that the chest X-ray looked "very pretty."
The medical team has begun to wean Madeline off of nitrous oxide which is being used to expand the vessels so she can get more oxygen to her lungs. When she no longer requires nitrous oxide, they will begin to wean her off of the ventilator. Assuming all goes well, that process will hopefully be complete sometime this weekend.
Madeline has made slow, but steady progress over the past four days and reached another important milestone in her road to recovery today. She began to receive nutrients through a feeding tube that goes through her nose and directly to her stomach. The last solid meal she ate was late Friday afternoon (veal parm -- one of her favorites!), so with the major surgeries behind her and an increasing level of sustenance, we’ll hopefully start to see her energy return.
While she spent most of today sleeping and medicated post-surgery, Madeline’s eyes flew open when her nurse told her, “Jim is here!” She was awake a few short times during Jim, Colleen and Mike’s visit, although clearly still affected by the anesthesia from this morning’s surgery. However, she still showed her patented positivity. Jim brought a picture of Jack, Danny and Matty announcing the impending arrival of their new sister, and when he showed it to Madeline, she lit up. When her nurse asked who was in the picture, Madeline mouthed, “My boys!”
While visiting with Madeline, her family has been sitting by the foot of her bed, wearing disposable gowns and spend most of the time reading, working, and reading all of your comments. They hope that Madeline will be more alert and responsive tomorrow as the sedatives begin to wear off.
As 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!