Tuesday 1/29/19 ... continued

Surgery went well. The new tube was placed in her stomach and skin graft was put on. Doctor said the area looked good and hopefully she won’t need another one but they will know that in 7-10 days. When she got back to the room Rob said she looked ok and is resting. Hoping she gets a good nights rest! 

Tuesday 1/29/19

Meghan’s labs again were decent this morning, her hemo is 8.5, white count is down to 12.8 and platelets are at 330. She will be going down for her surgery this afternoon. She is doing some standing again today. She did 15 minutes at 45 degrees and 15 minutes at 50 degrees. She went to surgery around 1pm. 

Monday 1/28/19

Meghan had a good nights sleep. ACES changed her wound vac this morning. Her nurse today brought in two new CDs for Meghan to listen to while doing PT and OT. She stood this morning at 46 degrees and will again this afternoon. Meghan’s vitals are looking really good. Meghan is fully aware of the surgery she has tomorrow and excited to get the tube out of her nose.

Sunday 1/27/19

Meghan slept most of the night and labs are looking decent. They are sending out a sample to the lab of Meghan’s fluid from her drain. They are checking that for tube feeding liquid and to see if it is leaking into her abdomen. So Rob was able to have a meeting with the doctors today and conferenced in Jimmy and Nicole. So information about her tube feedings. It was in the fluid, they said the fluid was backing up and not moving through Meghan’s intestines so they lowered that back to 10ml. She will have her next skin graft surgery on Tuesday. They are happy with how her abdomen looks and hopeful this one will take. Also they will be using Meghan’s own skin. Within 7-10 days they will know the status of the skin graft. They will know if it is taking and if she would need a second one or not. Right now Meghan has a tube in her nose which suctions out any fluid that gets in her stomach. During the surgery for the graft they are going to remove that tube and place a new one directly into Meghan’s stomach. This tube will still be used to suction out anything but it is just to make Meghan feel more comfortable. If things go well with the skin grafts next topic is Meghan’s trach. The doctors want to make sure she is done with surgeries before removing that. Rehab is down the road but the skin graft has to be 100% in order for her to go. Meghan stood today at 52 degrees for about 10 mins. All of her vitals are good. Meghan had a visit with Hunter today and hopefully Teagan will be down during the week. We got a lot of information today and doctors seemed very hopeful that we’re heading in a better direction. They did say she still had a very long road ahead but we are taking tiny steps forward. 

Saturday 1/26/19

Mom and Dad went to visit Meghan today. Labs are about the same from yesterday. Meghan was in her chair for about 2.5 hours today and stood in the bed for about 15 minutes. Meghan said her legs were sore and they explained that was good. It is a sore like going to the gym, it’s a sign her muscles are working. Hopefully Meghan keeps moving forward, slow and steady. 🙏🏼

Friday 1/25/19

Meghan’s labs are still just about the same, hemo is 8.6 and white count is at 24.8. All the cultures they took are still negative. Meghan stood in the bed today for 20 minutes at 45 degrees. Meghan’s tube feeding went up to 20ml. This is still a small amount but slow and steady. She stood in the bed for a second time today for 21 minutes at 51 degrees. 

Thursday 1/24/19

Meghan had a quiet night and labs are holding stable. She did some PT today for about 90 minutes. Doctors are happy with the way Meghan’s abdomen is looking. They believe the tube feedings are doing what they wanted. Vitals are strong and hoping for a restful night. 

Wednesday 1/23/19

Meghan had a good night and slept most of it. Her hemo is 8.5, white count is at 27.4 and platelets at 336. Meghan spent 2 hours in her chair today and vitals are holding steady. Not much going on for Meghan today, which we all like to hear. 

Tuesday 1/22/19

Last night was not a great night. Meghan’s heart rate went up around 3am and they took labs early and her hemo had dropped to 6.5. She received 2 units of blood and one plasma. ACES did a bedside evaluation and saw it was the same exact area bleeding. They repacked her and it has stopped. Her labs after getting the blood came back and hemo is up to 9.2. Although her white count went up to 38.8, infectious disease doctors are watching her closely and new cultures were taken. Around 10pm her vitals are back to being stable and Meghan is just exhausted. 

Monday 1/21/19

Meghan slept most of the night last night. Labs came back and hemo is at 7.7 and her white blood cell count is at 19.5. Meghan still has no signs of any active bleeding. Today they did decide she will be moving back to IMC (Intermediate Care Unit). PT and OT did some work with her today. She stood on the floor twice for about 45 seconds with assistance on both sides. Tube feed is still happening at a very small amount but she seems to be tolerating it. She was moved around 6:45pm and all settled in. Vitals are good and hopeful for an uneventful night. 

Sunday 1/20/19

Doctors said the labs are showing the vitamin K is working. Meghan got some decent sleep last night as well. There are still no signs of any active bleeding. Hunter had a good visit with Meghan today! They both enjoyed seeing each other and Hunter got to give mommy lots of kisses. Rob got to talk to one of the doctors about her future skin graft. Right now with the amount of fluid still in the abdomen the graft would not take. They said they have to wait to do the graft until the amount of fluid has decreased. They did an ultrasound yesterday to check for any clots in her legs and that came back all clear. Doctors were happy with the dextrose coming out in her colostomy bag and decided to try and start tube feeds. It is a very small amount at first and they will see how Meghan tolerates it. Hopefully these uneventful days continue. 

Saturday 1/19/19

Meghan’s hemo is holding steady around 7.3. She had another uneventful night. Doctors from ICU put in for a transfer back to the IMC (intermediate care unit) but ACES denied it for now. Vitals have been stable all day. Rob will be bringing Hunter to see Meghan tomorrow. 

Friday 1/18/19

Meghan had a decent night and ACES will be doing a dressing change today. Labs came back and hemo is at 7.3 and white count is 17.9, which is in the right direction. Meghan’s plan for the day is some PT & OT. Vitals are stable and we are all praying it stays this way. 

Thursday 1/17/19

Meghan’s hemo early this morning is 7.1 but no new bleeding that they can see. They are still giving her dextrose and will be watching her output in the colostomy bag. Meghan was in her chair for 5 hours today. No need for labs during the day, vitals were all stable. Hoping to have a restful night. 

Wednesday 1/16/19

Meghan had a decent night. ACES explained to Rob that she still does have fistulas but they aren’t super worried about them right now. They will not go in surgically, that would cause more harm. Her hemo this morning is at 7.6 and white count at 17. The spray foam she has as packing will dissolve over time and it has clotting factors in it. All cultures are still negative and not showing anything new. Meghan is having a pretty relaxing day. Around 6pm they were checking her abdomen and saw some blood. They are going to do labs and watch it closely. Hemo only dropped to 7.4 so not alarming but the white count jumped to 24. Vitals are all stable. The doctors are thinking the jump in white is her body trying to heal. 

Tuesday 1/15/19

Meghan got a good nights sleep last night. The dextrose they are doing will be going on slowly for a few days to see how she tolerates it. We all wish we could give her some Olive Garden or a Coke and we bet that would wake her intestines right up. Next labs, hemo is about the same & white count is slowly going up. White count is at 19.5. IR (Interventional Radiology) was checking her drains today too for correct placement. ACES did her dressing change and put the wound vac back on. There are no signs of active bleeding. Also they changed her packing to a spray foam to keep pressure on the area. Meghan did some PT & OT today as well. She has been off the vent for a little bit and no issues so far. Labs are back down to once a day. 

Monday 1/14/19

Meghan’s had an uneventful night. Her labs this morning were, hemo 7.4 & white blood cell count is at 16. Blood pressure is holding stable and with no medication. All the cultures they have taken are still negative so no changes with medications for any infections. They are going to try putting dextrose through her intestines and try to get them to wake up. Hopefully if this works, Meghan would be able to get tube feeds and get the better nutrition she needs. 

Sunday 1/13/19

Doctors gave her blood after last nights labs. This morning her hemo was at 8.3. ACES was in to check her abdomen and do a packing & dressing change. Currently she has no active bleeds so hopefully this continues. Labs again were taken and hemo is down to 7.6. Rob got to talk to the doctors and they do not believe she is actively bleeding. They are thinking because of her current blood infection and all the fluid they are giving her it is affecting her hemoglobin. She had another echocardiogram this morning and the number from that test has improved to 55% so that went in a better direction. Around 4:30pm doctors came in and are happy with how things look. They stopped the blood pressure medication for now and she has been around 110/61. They would like to get her off the vent tomorrow. Next labs came back and hemo is 7, white count is 15.8 and platelets at 175. Meghan asked the nurse to stretch out her legs and do some PT exercises. Last labs for today her hemo went up 7.3, fingers crossed we stay in this direction! 🙏🏼

Saturday 1/12/19

Morning labs weren’t great, her hemo is 7.8, white count 13 and her blood pressure is still low at 91/53. Little later in the morning her blood pressure was 88/51 and they have her on Tranexamic Acid to help her blood clot. While ACES was checking on Meghan and doing rounds they had a conversation with Rob. Surgically, all efforts have been exhausted. Meghan’s pancreatic area has been operated on so much and all her veins & arteries have been blocked off. Doctors are saying they can’t do anything more surgically to Meghan without causing more harm. So moving forward all they can do is pack the area. If the bleeding doesn’t stop from packing, there may be a very difficult conversation none of us want to have. 😢 Meghan is on stronger pain medication and is in and out of sleeping. Currently her packing is not soaked in blood so that is good so they can’t say for sure if she is currently bleeding. Doctors just did a dressing change and skin graft that she has is still fully in tact. They are doing a chest X-ray to check for fluid and any new infections. She also will get another echocardiogram done tomorrow morning. Around 5:45pm labs came back and hemo is at 7.5 and white count is at 15.6. Her blood sugar dropped way low to 36 too. They gave her some dextrose to help. Her blood pressure keeps dropping and going back up so they keep upping and lowering her medication. They are giving her some fluid to help maintain her blood pressure. Next labs came back and hemo is 6.7. Meghan has received almost 3 liters of fluid in the past 24 hours so they think that is just diluting her blood. 

Friday 1/11/19

Meghan had a decent night and labs are all holding stable. She stood today for 20 mins at 60 degrees and had an ice pop while standing. Labs will only be once a day, they want to take the least amount of blood possible. The uterus situation with the blood has been put on hold, her white count is normal so they don’t think that is an issue. Around 630pm doctors called Rob and Meghan’s body was not responding to the vitamin K anymore so they were going to try it again. With PT she stood 3 times today. Bad news there were some clots coming out of her one drain. They are doing labs now and a CT. Vitals are stable right now. They decided while taking her to CT they will be taking her back to ICU. They believe she is bleeding, her heart rate is 140 and MAPS at 60. Rob called me on his way to the hospital and her hemo came back at 10. Which doesn’t make sense, on the CT they saw an active bleed in the area of the pancreas. They took out a huge clot the size of a placenta. Doctors are with her and looking at things bedside in her room in ICU and Meghan is under anesthesia. It was a venous bleed in the pancreatic area. The doctors have packed it with biodegradable gauze and combat gauze. She got one unit of blood. They will redo labs around 1230-130am. Meghan’s heart rate is still high at 140 and MAPS 63. They have blood on stand by if needed and still on medication for her blood pressure. Since they have never seen anything like this, the doctors have no case studies even close to what Meghan has been going through. Right now, the doctors do not have a long term plan. They will act as soon as anything happens. They ending up doing labs around 10:30pm. Meghan’s hemo is at 9.5, white count is 6.5 and platelets at 223.

Thursday 1/10/19

Hemo dropped last night to 6.7 and they are giving her two units of blood. Blood work showed the vitamin k did help a little bit. Also with her ooze bleeding she needs better nutrition for that to stop. The TPN is giving her what she needs but it isn’t the best. Once she heals and gets better nutrition the ooze will stop. Doctors are telling Rob to hold on to the small victories, doing good with PT and out of ICU. The skin graft she has looks healthy. Hemo around 5:30pm is 9.5, white count is 4.4 and platelets are 258. She had a decent day with PT and vitals look good - heart rate is 120 and MAPS 93. 

Wednesday 1/9/19

Midnight labs came back and hemo was 7.3, so they are holding off on blood for now. Plan for today - OB will be getting back involved. The most recent CT showed blood in the uterus. This has been there but doctors did not relay that information to Rob. They are now bringing it up because it may be the cause of the new infection. Dr. Diaz wants to also do a fistula gram to see if & how fluid is moving in her abdomen. They are going to watch the drains very closely for any issues with the output. Labs at 4am hemo stayed the same so that was good. The OB evaluation will be pushed to tomorrow. Doctors want hematologists to get back involved to retest her blood. Hematologists will be dissecting her blood and looking at clotting issues/bleeding issues. The blood in the uterus may not be the issue but they are looking into all options. PT worked with her today for about 45 minutes. The one drain on her left side (JP drain) is not draining anything. Abdominal drain is doing about 50CCs every 4 hours. Labs will be redone at 4pm. She stood again at 50 degrees for 20 minutes. This was the first time her knees did not buckle. They also approved her to have a little orange sherbet today too. Hematologists finally decided after looking at everything to give her vitamin K. They will watch her labs to see if this makes a difference. OB will do a consult still just not sure when. Meghan’s hemo is currently at 7.1. 

Tueaday 1/8/19

Meghan had an ok night. Hemoglobin dropped to 7.7 but doctors are ok with that as long as it’s over 7. Doctors ordered a CT to check her abdomen. This is being done to see if any new fluid collections are anywhere since the stent procedure. One of her cultures came back positive for a new bacteria. Doctors changed up her medication. Meghan stood today for 20 mins at 46 degrees and was allowed to have an ice pop. Meghan had a surprise visitor today from Dallas. Nicole was in Baltimore for work and got to stop by the hospital. CT came back and no new collections of fluid so that is good but during shift change the nurse thought there was some blood in her drains. They are going to redo her labs around midnight.

Monday 1/7/19

Meghan had a good night and almost slept all of it. Labs are looking stable and doctors are happy about that. She was doing some PT today with nurses and they are still waiting for a room on the other unit to open for her. She was moved to IMC (intermediate care unit) around 530pm. 

Sunday 1/6/19

Meghan had a decent night of rest, she had a busy day yesterday with visitors. Hemo is stable around 8.2 and white blood cell count is at 11.5. Me, mom, Dad, jared and gram were watching football with her. She has stood for 15 minutes in her bed today as well. Doctors are hoping to get her back to IMC (Intermediate care unit) again but later today or tomorrow. We are all hopeful for a good nights rest. 

Saturday 1/5/19 - Meghan’s Birthday

Today is Meghan’s birthday & Teagan is 4 months old. Meghan had a bunch of visitors and she got to see Hunter and Teagan. The nurses let Meghan have a pretty relaxing day. Overnight she was having a little anxiety and little chest pain. They did an echocardiogram during the day to see if anything was going on. Later explained to Rob that the left ventricle has moderate decreased ejection fraction of 40-45% and normal is 50-60%. Which in the doctors definition to Rob was the heart isn’t pumping with full strength. They see this happen in patients with prolonged sickness. They also told Rob although it isn’t 100% normal it isn’t worrisome. As Meghan gets better it can go back up. The nurses were so good to Meghan, they brought in a cake and decoration to try and make the day the best it could be for her. Her team of doctors also approved an ice pop for her to celebrate with all of us 💗 Thank you to everyone who sent birthday wishes we told her about all of them. 

Friday 1/4/19

She had an ok night and labs are stable. The nurses are going to try and get her moving today with some PT. She was able to do standing exercises, once in the bed for 10 minutes and twice on the floor for about 30 seconds each time. They changed her dressing on her abdomen and doctors are happy with how that looks. 

Thursday 1/3/19

Results from the amylase came back high so the stent surgery will be today. Labs are holding stable. She finally got some good sleep early morning today. Surgery will be between 4-5pm. So from the surgery they saw major pancreatic duct damage. The doctors are calling these disruptions. They are explaining to Rob the three parts of the pancreas, the head is where it is connected to the intestines and that is intact. The body and tail are where the leaks are. Due to all of the disruptions they were not able to do the stent to completely bridge all of the leaks. Its possible that the stent could help but not 100% the way they would have liked it to. 

Wednesday 1/2/19

Stent surgery should be today, when they have a time the doctors said they would call Rob. Still no time at 4pm. They decided to run another test called Amylase. This test measures the enzymes the pancreas puts out in the body. The test can determine if there is disease/disorder of pancreas by measuring the amount of amylase in your body. Meghan’s gastroenterologist wanted this test done to make sure the stent surgery was absolutely necessary. If the level is high they will do the surgery tomorrow. 

Tuesday 1/1/19

Meghan was a bit nauseous last night but the nurses are thinking it’s from the pain medication. They took another CT today just to make sure nothing was off due to all of Meghan’s nausea. Official read isn’t back but nothing looks alarming. The doctors did a dressing change today and no bleeding was seen. They are going back to labs only once a day now. They don’t want to take them if it isn’t necessary.  Today not much going on for Meghan, but hopefully getting rest. 

Monday 12/31/18

• Meghan’s labs are staying stable. She had an ok night and no issues. Labs are going to be dropping again to only twice a day since they have been stable for a few days in a row. Hunter was with me for New Year’s Eve and we got to FaceTime with Meghan at midnight to say hi 💗 Thank you to everyone for continued prayers and definitely wishing for better health in 2019!

Sunday 12/30/18

MRCP was done at 1am. They saw what they needed to and saw where they can put a stent in to hopefully help the healing process. They hope to do the stent sometime this week. She was doing very well with only pressure support from the ventilator so hoping she will be off of that by the end of today. The MRI came back that 2/3rds of the front and the back of the pancreas are viable. There is a part in the middle that had the damage. This is where they are going to place the stent. The surgery is less invasive as they use a camera going through her mouth. She got off the vent around 1-1:30pm. So hopefully she will do good with that and it will only be needed again for surgeries. 

Saturday 12/29/18

Meghan had an ok night. Her labs are stable. She is still on the vent but a very low setting. Meghan just rested for the day around 5:30 her hemo went down again from 8.8 in the morning to 7.7. They are going to order a special MRI to look at the pancreas and area around it. The MRI is an MRCP (Magnetic resonance cholangiopancreatography).

This will show them what is damaged, how much of the pancreas is functioning and if there are any leaks. They do believe her labs at 4 were off because she has no signs of bleeding. The MRCP was not able to be done in the past due to how swollen everything was, it would not show the info the doctors were looking for.