Tuesday, July 31, 2007

Peter - Carepage - July 31st, 2007

Buddy Walk Information: The Buddy Walk is an event that promotes awareness on Down Syndrome in the community, while raising funds for the local Down Syndrome Association chapter. John and I are still getting information on the Colorado Springs one, however, our friend Aileen is sponsoring a team in the Denver (Mile High) Buddy Walk coming up. You can visit www.mhdsa.org to get additional information. If you are interested in joining or sponsoring the team, the team is "Rachel's Runners". Rachel is Jack's age and has Down Syndrome. If you have a chance to browse the site, about half way down the home page you will see an article called "How My Child Inspires Me; by Aileen Schwarz". This is Rachel's mom and she shares her story. Good luck Aileen! If and when John and I get information on the Springs buddy walk I will share it through an update for you local folks. Thanks! catherine

Sunday, July 29, 2007

Peter - Carepage - July 29th, 2007

Sorry for the delay in an update. I went back to work this week and still trying to get organized and into a routine! Peter had a very good week. On Monday - at exactly 2.1/2 months Peter gave us his first smile, then second, third and one more. We were so excited to see his little eyes scruch up and a smile form on his lips. We've been working him hard to get more out - but have only been worthy of a few more. We are hoping they will become more and more frequent!! The cardiologist visit went fine - Dr. Duster is tickled with Peter's progress. I had hoped we would start the oxygen weaning soon, but Dr. Duster decided to wait till the end of August for the next echo. Peter's scar is healing beautifully. It is amazing how resilient little ones are - so soon after his surgery and you would not know he had major surgery but for the line up and down his chest. We saw our pediatrician Dr. McCaffery on Tuesday. He is thrilled with how active Peter is, and says it is a good indication of his potential and IQ. Once again Peter just about wiggled off the table, and wacked Dr. McCaffery as he tried to peer down his throat. The throat has healed and all else looked and sounded great. Peter broke the ten pound mark by gaining an amazing 6.5 ounces in a week - making it to 10lb 4.5oz! Yeah Peter!! We still need the feeding tube which is a bummer, but Dr. McCaffery continues to help us make progress in the right direction. Peter has moved from eating 2.1/2 ounces every 3 hours, to eating 4 ounces every 4 hours. Spreading out the feedings should give him time to digest and get hungry, and the larger amount should expand his tummy a bit to also help him feel hungry and feed better. We've seen some improvement in his eating - but not good enough to get rid of the tube. We ask for continued prayers for Peter and this skill....we really don't want to have to get a G-tube! Being the wacky mama that I am, I will just about feed him upside down if I have to in order to have him eat. I have often got him to eat the whole feeding through the bottle - so there is a light at the end of the tunnel. Having the longer gap between feedings has also been a real blessing for our family - giving us an opportunity to do more together as a family. We were so excited to all go to church together today - also Peter's first Mass....and he slept right through it! Lastly, Peter continues to make progress with his physical therapy and we are so excited. We recently saw other kids his age, and realize where he is delayed. However, week over week we see him achieve more and more. I get so excited when he brings his knees up to his tummy, hands together or keeps his head in the mid-line. It has taken Peter to show us how to appreciate the little things....life is more often full of little accomplishments that build into something amazing, than just one big one. Some days it is easy to get busy and forget to be thankful. Then I'll see Peter do something we normally would take for granted - and my world stops spinning for that split second so that I can truly get excited and chalk up one more on life's board of blessings!! I've posted a couple of new pictures. Hope you enjoy them! The plan at this time is to try and post and update on each weekend until Peter is off oxygen and feeding tube. Thank you for reading each of his updates, and giving us encouragement during this awesome adventure we've been on. I look forward one day to sitting with Peter, reading these updates to him and explaining to him how special each and every one of you is that has stood along the road and cheered us on during the journey. Peter really has an amazing cheerleading squad - thank you!! Hugs! catherine

Tuesday, July 17, 2007

Peter - Carepage - July 17th, 2007

Peter will be 10 weeks tomorrow! I will be going back to work some time next week. It's amazing to think of all that has transpired in such a short period of time. I just wanted to send out a quick update on The Man. Yesterday he visited Dr. Duster - our cardiologist - whom was tickled with how well Peter is recovering. His wounds are healing nicely, he scored well on his oxygen saturation rates both on and off of oxygen, great EKG and a great echocardiogram. The echo showed that Peter's pulmonary hypertension is close to gone - yeah!! The pulmonary pressures were slightly above the higher end of normal, but the doctor seemed pretty convinced that Peter is doing great. He cut Peter down to a single dosage of diuretics and is going to leave him on oxygen for a little longer. He wants to give the lungs some time to heal after all they have gone through. I am hopefully Peter will be off oxygen in the next 3-4 weeks. Today Peter had a visit with our awesome pediatrician - Dr. McCaffery. He weighed in at 9lb 14oz, so about a 6oz weight gain since leaving the hospital a week ago. Amazing! And we don't need to fortify the breastmilk any more....we just need to keep an eye on his weight. His right lung sounded good so he continues to or has recovered from the collapsed lung. All is else was good and Peter just about threw himself off the exam table. He has learned to arch his back and push with his feet to turn around. The only set back we seem to have experienced since Peter came home was his feedings. As most of you know, the topic of feedings has been stressful for me with other kids - and I was loosing strength running into this with Peter. He had slowly been increasing the amount he was taking orally until this last weekend when he took a huge turn for the worse - barely taking anything orally. It became quite stressful as I was convinced I had "broken" Peter by pushing him too hard to take more orally. He was pushing everything out of his mouth and quite mad at it. I started working with the pacifier and he did great with that - just not the bottle. I have spent a small fortune on different nipples - just to have it work once and then be rejected after that. John and I had been concerned with Peter's throat while we were at the hospital, but cardiologists just don't check that out no matter how many times you express the desire to have it checked out!! :-) We assumed things were getting better, so unsure on the rejection of the bottle. Dr. McCaffery spotted that Peter's throat seemed quite red, and has given us some medicine to help him heal it. He concurs that Peter has what it takes to eat well, we just need to help him get there. Peter has shown some improvement this afternoon, and I hope that with the medicine he will continue to improve. It would be great to be off the feeding tube as I am sure it is no fun having a tube dangling down your throat. I ask that you continue to pray for Peter and in thanksgiving for the miracles of healing he continues to receive. I continue to pray for this too, and have felt the need to pray for Peter to be strong against the threat of leukemia (sp?). Children with Downs are at a 15 to 20 times greater risk than typical kids, and it is something that has bothered me since we received Peter's diagnosis. Peter's Godfather Bob received a miracle of healing from this same illness. I pray that Bob carried this burden for the family and that Peter will be spared challenge. Thank you to all again for all your many gifts and blessings!! Love, The Krauses.

Tuesday, July 10, 2007

Peter - Carepages - July 10th, 2007

Dropping you all an update from Colorado Springs! Yep, I got to the hospital this morning to find out we were being discharged. After running around to pack up, clean the room at the Ronald McDonald House and get John up to Denver - we boogied on out of there and home in time for dinner (thank you Kristen Z!). Peter continues to do well, and improving with his feedings. I am confident that as he continues to heal from being on a ventilator, he will do better and better. It is amazing to think 8 days ago he was having open heart surgery and tonight he is asleep upstairs! We will be setting up follow up appointments with his pediatrician and cardiologist so as to baseline him post-surgery in Colorado Springs. It is so exciting to get started with his therapy again and watch him take little or big steps forward. It will take us a few days to get back into the routine, and John is not excited to be sleep deprived again. We hope one day Peter can actually nurse so that it will be easier on all of us! Thank you again for all your support, prayers and encouragement. I will try posting some photos in the next couple of days, and will continue to post updates through out Peter's recovery. I will likely go back to a weekly schedule. Now I'm going to go stare at my beautiful and wonderful little sleeping angel. HUGS! catherine

Monday, July 9, 2007

Peter - Carepages - July 9th, 2007

Just a quick update to let you know that Peter continues to take more steps forward than back...and we are hopeful these steps will get us home in the next couple of days! It sure would be nice to spend some of my maternity leave at home!! Peter's digestive system seems to be on track and the poop keeps coming! Yippee!! We had noticed Peter appeared to be in some discomfort - especially in his throat. As a result he really didn't want to drink from the bottle, and would grimace when swallowing. Yesterday they put him on scheduled Tylenol (as opposed to on demand), but it didn't do the trick. After talking to the docs again today, they put him back on Tylenol with codine - and it seems to be working. He is resting better and during his last feed sucked from the bottle like a champ. Yeah Peter! He was almost off oxygen completely, but the cardiologist wants to leave him on some oxygen for a period of time to ensure the pulmonary hypertension continues to improve (go away). The echocardiagram this morning showed there still is moderate pulmonary hypertension - but they are optimistic it will continue to improve. We will need to work with the cardiologist in Colorado Springs to determine the amount of oxygen and when he can come off of it. We are hopeful no more than 6-8 weeks. Today was a special day as Peter turned two months. It feels like such a long time since he blessed us with his arrival, but it is exciting to know we still have so many more days, weeks, months and years to marvel in the blessing that he is to all of us. John and I marvel at how Peter engages, and is present to those around him - and he is working on moving from little grins and smiles to a full fledged giant smile! You really sense by the way that he looks at you that he is in full relationship with you for that period of time. No doubt God made him very special!! Hugs to all! catherine

Saturday, July 7, 2007

Peter - Carepages - July 7th, 2007

Peter graduated today! This morning he was moved out of the CICU and up to the step-down unit (CPCU) in preparation to go home. He was a bit fussy this morning as he tried to get a poop out...he was very happy after he accomplished his big goal. He has been much more his normal self today - periods of playfulness and periods of sleep, and once again very able to just focus in on you as you talk to him, follow a color he likes, or turn to find the face of a new voice. He is free of all his lines, but a peripheral line they are keeping in his foot just in case they need to access it. He is off almost all drugs - taking only Tylenol and a diuretic orally. He is still on the high-flow oxygen/air blend, but they are starting to wean him down. He is doing so awesome! God is good!! From what I can tell he has a few goals to accomplish in order to go home - wean down on the oxygen although he will most likely go home with some, and start to eat orally and have regular bowl movements. I gave him a try on the bottle tonight. It was a bit of a strain for him but he took some of it. The little look on his face would lead me to believe his throat is still sore from being intubated (on the ventilator). All in all, Peter had another great day. It is hard to believe 5 days ago he had major surgery and today he was almost back to his pre-surgery self except more pink! His breathing has been doing so well, it is just great to see him! Just wanted to give you a quick update. John will be back with us tomorrow, so I know Peter is looking forward to seeing John as much as I am. The kids will be headed back down from Sout Dakota on Monday - so I am hopeful we will all be together for John's birthday on Saturday. Big hugs! catherine

Friday, July 6, 2007

Peter - Carepages - July 6th, 2007

Peter had a great day today! All steps forward!! When I came in this morning, Peter was already off the CPAP and back on high flow oxygen/air blend. He is down to 30% oxygen and holding his own. His saturation rates, blood work and respiratory rate were all great. He had two "lines" removed today leaving him just two IV lines - the one in his wrist and a new one in his foot. He continues to wean from drugs, and we believe by tomorrow morning the big one in his wrist will be out. If Peter continues to do well, I have a feeling we will be moving down to the step-down unit soon. They are trying to jump start his digestive system. They are starting to feed him again very small amounts of breastmilk through the feeding tube. I am hoping we can try bottlefeeding within the next couple of days. Peter was quite restful today and showed no signs of discomfort. This afternoon he decided it was time to wake up and play. His eyes were all over the place as he moved his arms and legs wildly. He also has a funny thing going with his tongue where he loves pushing it in and out, curling it, stretching it, etc. Suffice to say the tongue was getting quite a work out too. Because he was so awake he was given a treat, and allowed to hang out in a swing for a bit - he loved it - it swings back and forth as well as sideways, has a colorful fish mobile that turns too. Needless to say - quite stimulating and Peter was enjoying every second of the ride. I know what we will be picking up after Peter comes home! Thank you again for all our support and prayers - when I look at Peter I know his healing is a miracle! Love, catherine

Thursday, July 5, 2007

Peter - Carepages - July 5th, 2007

As with any recovery - it is two steps forward and one step back. All in all Peter is doing really well. He continues to move forward with having tubes removed and drugs reduced. This morning John and I were surprised to find Peter off the ventilator and on high flow oxygen. While Peter did a good job maintaining his saturation levels, this afternoon he was breathing very shallow and fast. The latest x-ray showed some lung deterioration - especially in the area of the right lung that had collapsed. In order to help his lungs inflate properly and encourage him to breath deeply he was moved to a CPAP (continuous positive airway pressure) - basically a mask over his nose that pushes enough air to keep the lungs inflated with out breathing for you like a ventilator. It looks like an infant version of the mask folks use for sleep apnea. Within minutes of being on it he showed improvement. They will be taking another x-ray in the morning to determine next steps. We are confident that this is just another step in Peter's recovery and that he will continue to move forward. We were very excited to get to hold Peter today. While we will now need to wait until he is off the CPAP, we can rejoice in the time he was in our arms. I even took a little nap with my little man this afternoon. Another positive is that so far he has not shown signs of pulmonary hypertension so we are encouraged that the surgery really was the necessary step to help him heal. On a different note, we were able to get back into the Ronald McDonald house - yeah!! John headed back to the Springs today, but hopes to be back sometime this weekend. We are extremely grateful for all the blessings we have received. Hugs! catherine

Wednesday, July 4, 2007

Peter - Carepages - July 4th, 2007

Today is not just July 4th....today Peter is 8 weeks old!! In his short life he has gone through more than most of us will in a lifetime. A 7 day facial treatment in the Springs (the oxygen mask), a couple of days and nights under disco lights (jaundice treatment), a therapeudic ambulance ride with three hot babes, messing with doctors by going blue and trying out kidney failure, keeping Papa and Mama up day and night at home, and showing off (literally) his heart for all to see. Peter is being forced to slow down for a bit and rest :-). Yesterday Peter did the two things they wanted him to do - show improvements with the third of his right lung that collapsed, and pee. Although he is still healing, the x-ray taken last night showed a drastic improvement from the one earlier in the day. The right diuretic cocktail and the pee keeps flowing. Way to go Mr. Peter Bear!! Today they tried for a second time to take Peter off the ventilator, but not successful. While he is breathing on his own, he still has some pulmonary edema (fluid around the lungs) that makes him need the ventilator to keep his oxygen saturation rates. They are going to keep treating the edema and give him periods of time to 'practice' being off the ventilator. They are hoping that maybe tomorrow he can come off of it. Our friends from the NICU/ICC area said it is actually good to have him still on the ventilator as it allows him to be more sedated to manage his pain. Having your chest bone cut open, spread apart and then closed up with stainless steel 'stitches' is painful for anyone to go through. Because Peter has been doing well, a lot of the other tubes were removed today. The two 'drainage' tubes were removed as well as the pace maker wires. The bandage was taken off the incision and I was very impressed with what a nice job they did. I was expecting him to look like he had a zipper down his chest - it is actually not much more than a pencil mark with the stitches on the inside. Peter is starting to loose some of the swelling and look more like himself. He has periods of extreme rest and some of wakefulness where it looks like he is dancing the can-can as his legs kick up and down sending his blankets flying. His heart rate and respiratory rate would indicate that most of the time he is comfortable, which as parents is very reassuring. We are so proud of our little man and all he continues to accomplish. We look forward to holding him in our arms again soon!! Thank you again for all the wonderful support you have given us....and especially to April, Ben, Chris and Tita whom made surgery day so enjoyable and shared in our joy of seeing Peter after his surgery. Love to all, catherine & john

Monday, July 2, 2007

Peter - Carepages - July 2nd, 2007

Green represents life - grass, plants, trees. Peter went into surgery at 8:30am with a green mohawk. Around 3pm John and I were taken back to the CICU (cardiac intensive care unit) to see our little man starting a whole new phase of his long life!! Peter did great! He is resting right now, and no doubt dreaming of going home soon - yeah! John and I got to Denver around 7am. We were greeted by Peter's primary nurse in the ICC - Kodi. She gave us support and Peter a big kiss for a successful day. After checking in we moved to pre-op. We gave Peter his green mohawk while the nurses got him all ready for surgery. I was staying strong and doing great until they told me it was time to hand him over and watch them walk away with him. Peter was awake at the time and no doubt thinking "when will you quit kissing me mom?". We spent the next endless hours in the waiting room where we received regular updates through out the surgery. We were very blessed to have our friends Chris, April, Tita and Ben come to give us moral support. The time was filled with lots of laughter and I'm sure that energy reached Peter in the O.R. Around 3pm we were taken back to see Peter. Despite all the tubes and wires, Peter looked well to both John and I....his hair do intact! Peter is on a ventilator which is inserted through his nose. By early evening he was breathing on his own, so they are weaning him off the ventilator. We hope to have it removed within the next day or so. He has two tubes draining blood coming out of his abdomen - one drains blood from the cavity around the lungs, and the other the cavity around the heart. Both are draining little fluid which is great. He also has two sets of wires coming out in the same area - they are inserted to his heart and can be rapidly attached to a pace maker if necessary. He has an IV in his foot, a catheter, a line into his arm for easy withdrawl of blood dispensing of pain medication. He also has a line going in around his groin area where they get blood pressure readings from. Peter has some minor swelling, but is healthy and pink looking. It is still too early to tell the effect on the pulmonary hypertension, but the signs are positive. He did have a small portion of his right lung "collapse" but the doctors are positive he will recover from that. He has shown some signs of discomfort, so they are closely monitoring him and adjusting his pain medication. While I know there is still a recovery period to work through, as a mom I have this gut sense that he is doing great. When I sit next to him I feel the miracle of healing going on inside his little body - and I am in awe! The energy he radiates is so full of life!! We are sooooo thankful for this miracle, for the prayers that brought it on and can't wait till Peter can be in our arms again. Sorry this is short, my attention span is short due to NO sleep. John and I are going to spend some more time with Peter, and will be sleeping at the hospital tonight. Love to all! catherine