Thanks to the CAP/C program Graham qualifies for a nurse 126 hours a week. Matt and I have arranged our hours such that Monday through Friday we have a nurse 8am to 6pm and then 10pm to 8am. And then Saturday we have a nurse until 1pm and then Saturday night and Sunday night. All the hours we don't have nursing Matt or I need to be with Graham. Graham is fairly stable on the vent but things can get serious real fast for Graham if something happens.
Having a nurse to help care for Graham has been a blessing in many ways because it allows me to go the grocery store, or care for the babies, or take a shower, or travel in the car with Graham. But it is also very difficult to entrust Graham's care to strangers. We have had 20 or more nurses since Graham came home in April. Some of them are very experienced with trachs and vents and others don't have a clue what they are doing. So I have learned that I must evaluate the nurses and not assume they know everything. In addition to having the necessary medical knowledge and experience a nurse needs to be able to get along well with Graham and with Matt and I.
We had a great nurse 4 days a week that recently took another job outside of home health. She adored Graham and he adored her. We are pretty devastated. We have some other good day nurses that are taking over but this other nurse was just such a great fit for our family. No nurse is going to love Graham as much as me or do everything the way I would do it. But I have to run our household and care for the twins too, so I need help. Getting and keeping good nurses is a constant struggle and prayer need for us!
Thursday, October 15, 2015
Wednesday, October 7, 2015
October is for Birthdays
Graham turned 3 last Friday (October 2) and the twins will turn one on October 21. Last Saturday we had a Sesame Street birthday party to celebrate. We invited a few friends and family. We did things easy: bought all decorations at Party City, cupcakes at Harris Teeter, and pizza from Dominos!
We are so so thankful that Graham made it to his 3rd birthday. It has been quite a year for Graham and our family. There were many times we thought we might lose him during those six months at Duke Hospital. But the Lord spared him and we are enjoying every day at home with our whole family. Praise God! On Sunday the teacher at church asked us to close our eyes and envision the most beautiful place we had ever been. My mind oscillated between the Chowan River, where my parents now live and where I spent all my summers growing up, and sitting in Graham's room in the glider rocking him when he is having a hard time going to sleep.
I can't believe Ben and Hallie are almost one! They are such a joy. They are usually in a good mood and smile easily. They love finger foods. They are speedy crawlers. They want to play with whatever big brother is playing with, which often causes trouble. Ben finally has two teeth and Hallie still has none.
We are so so thankful that Graham made it to his 3rd birthday. It has been quite a year for Graham and our family. There were many times we thought we might lose him during those six months at Duke Hospital. But the Lord spared him and we are enjoying every day at home with our whole family. Praise God! On Sunday the teacher at church asked us to close our eyes and envision the most beautiful place we had ever been. My mind oscillated between the Chowan River, where my parents now live and where I spent all my summers growing up, and sitting in Graham's room in the glider rocking him when he is having a hard time going to sleep.
I can't believe Ben and Hallie are almost one! They are such a joy. They are usually in a good mood and smile easily. They love finger foods. They are speedy crawlers. They want to play with whatever big brother is playing with, which often causes trouble. Ben finally has two teeth and Hallie still has none.
Tuesday, July 7, 2015
Nom. Nom. Nom.
I will start with the biggest and best news first... Graham is eating by mouth! Graham had a swallow study on June 30th and he aced it. He was completely cooperative, letting us strap him in a tiny seat enclosed by an xray machine. He willing took all foods and drinks and swallowed perfectly on all consistencies. He is approved to take WHATEVER he wants by MOUTH!!
The speech pathologist was stunned. She couldn't believe that with Graham's respiratory history and not eating for 6 months that he did so well. She put her hand over the trach on the xray image and said if the picture didn't show the trach we wouldn't be able to tell it was there from his swallow pattern! Graham's home nurse was in tears and I was close. (I don't cry anymore. A 6 month hospital stay for your 2 yr old will do that. It will come back one day.)
We praise God for this milestone. It really is a MIRACLE. If you recall we had him on thickened liquids and pureed foods in feeding therapy last fall. Now after intubation causing some vocal cord paresis and the tracheostomy and not eating anything since January he is swallowing perfectly?!?! God answers prayer!!
This is such a game changer for our whole family. Graham is THRILLED to be eating again. We have not eaten or talked about food in front of Graham for months and now he can sit at the table with everybody else and eat. We are taking it slow with easy to eat foods such as crackers and applesauce. We are trying to get him in the UNC feeding clinic to for help moving forward and guidance on weaning gtube feedings once he is consuming more by mouth. Right now eating is more of a quality of life thing for Graham. The gtube will be around for a good while still and we are ok with that.
Look mom, no vent!
Graham has also been approved by the pulmanologist for 30 minute daily trials off the ventilator! (He still has the trach in his neck but it isn't connected to the vent.) Graham can breathe well enough on his own for 30 minutes as long as he is playing happily. If he gets anxious or upset then his airways start to collapse and he has to go back on the vent. A small step in the right direction.
Nurses
We have one day nurse four days a week that we absolutely love. She adores Graham and he adores her. It is such a blessing to have somebody that we feel comfortable caring for Graham. We still need more good nurses for nights and other days and the nursing agency is having difficult staffing us. This is a prayer point for us. To have competent compassionate nurses to care for Graham and all of his medical needs.
Books
Graham's biggest interest right now is books. He has learned to sign "books" and is constantly asking for "more books." He loves to sort them, stack them, read them, and point to them for us to name them. He flips through the books and points out similar animals or objects in different books. He has several books in the same series and he can find each one pictured on the back of the other books. He is one smart cookie if you ask me.
Moving
We are planning to close on our new house on July 20 and move on July 25. We are so excited! We can't wait to be in a one-story house. We are starting the packing now.
Twins
Ben and Hallie are 8 months old and they are sitting up on their own. They are rolling and pushing themselves backwards. It's only a matter of time before they are crawling. They are babbling and within days of each other Hallie starting saying "mama" and Ben started saying "dada." It is so sweet to hear them. Maybe it will rub off on big brother one day. Graham enjoys being around the twins. It is such a joy to see them altogether!
The speech pathologist was stunned. She couldn't believe that with Graham's respiratory history and not eating for 6 months that he did so well. She put her hand over the trach on the xray image and said if the picture didn't show the trach we wouldn't be able to tell it was there from his swallow pattern! Graham's home nurse was in tears and I was close. (I don't cry anymore. A 6 month hospital stay for your 2 yr old will do that. It will come back one day.)
We praise God for this milestone. It really is a MIRACLE. If you recall we had him on thickened liquids and pureed foods in feeding therapy last fall. Now after intubation causing some vocal cord paresis and the tracheostomy and not eating anything since January he is swallowing perfectly?!?! God answers prayer!!
This is such a game changer for our whole family. Graham is THRILLED to be eating again. We have not eaten or talked about food in front of Graham for months and now he can sit at the table with everybody else and eat. We are taking it slow with easy to eat foods such as crackers and applesauce. We are trying to get him in the UNC feeding clinic to for help moving forward and guidance on weaning gtube feedings once he is consuming more by mouth. Right now eating is more of a quality of life thing for Graham. The gtube will be around for a good while still and we are ok with that.
Look mom, no vent!
Graham has also been approved by the pulmanologist for 30 minute daily trials off the ventilator! (He still has the trach in his neck but it isn't connected to the vent.) Graham can breathe well enough on his own for 30 minutes as long as he is playing happily. If he gets anxious or upset then his airways start to collapse and he has to go back on the vent. A small step in the right direction.
Nurses
We have one day nurse four days a week that we absolutely love. She adores Graham and he adores her. It is such a blessing to have somebody that we feel comfortable caring for Graham. We still need more good nurses for nights and other days and the nursing agency is having difficult staffing us. This is a prayer point for us. To have competent compassionate nurses to care for Graham and all of his medical needs.
Books
Graham's biggest interest right now is books. He has learned to sign "books" and is constantly asking for "more books." He loves to sort them, stack them, read them, and point to them for us to name them. He flips through the books and points out similar animals or objects in different books. He has several books in the same series and he can find each one pictured on the back of the other books. He is one smart cookie if you ask me.
Moving
We are planning to close on our new house on July 20 and move on July 25. We are so excited! We can't wait to be in a one-story house. We are starting the packing now.
Twins
Ben and Hallie are 8 months old and they are sitting up on their own. They are rolling and pushing themselves backwards. It's only a matter of time before they are crawling. They are babbling and within days of each other Hallie starting saying "mama" and Ben started saying "dada." It is so sweet to hear them. Maybe it will rub off on big brother one day. Graham enjoys being around the twins. It is such a joy to see them altogether!
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| Graham's stick. The only thing he could put in his mouth until recently! |
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| ALL day long. |
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| My babies sitting up! |
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| Riding the train at the mall! |
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| Finally got some pictures showing all of Graham's "hardware." (and his beautiful smile!) |
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| EATING!!! |
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| All my babies eating together! (And our favorite nurse, Amy, in the background.) |
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| No ventilator! |
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| New House! Can't wait to move. |
Monday, June 8, 2015
Life at Home
Well Graham has been home a whole month! We are exhausted, busy, and stressed. But we are home, all together, and we are soaking up every minute of it.
Graham's health has been stable. His blood levels are doing fine. His respiratory status is stable even after being off his inhaled antibiotic for 2 weeks. This may be the longest he has been off an antibiotic since October. He is going to the pediatrician weekly for weight checks and check-ups. Graham is gaining about an ounce a day which is great! The more he grows the bigger and stronger his lungs will get. He lost weight last week which thankfully seems to have been a fluke because his weight was back up this week.
Graham's health has been stable. His blood levels are doing fine. His respiratory status is stable even after being off his inhaled antibiotic for 2 weeks. This may be the longest he has been off an antibiotic since October. He is going to the pediatrician weekly for weight checks and check-ups. Graham is gaining about an ounce a day which is great! The more he grows the bigger and stronger his lungs will get. He lost weight last week which thankfully seems to have been a fluke because his weight was back up this week.
He is tolerating his feeds well (no vomiting or pain) so we have increased calories. He is now on Liquid Hope + avocado + coconut oil. We have weaned him off several meds and are hoping to come off more meds soon. He was on several meds for issues relating to his feeding difficulties but all that has been resolved since getting on Liquid Hope. But the doctors don't like to make too many changes at one time, so we are trying to be patient.
The most exciting news is that a Duke speech therapist gave approval for a swallow study. Graham will basically eat and drink substances with barium dye on them so we can see him swallow on xray and see whether or not he can safely swallow without aspirating. The trach in the neck can affect swallowing and his vocal cords are still recovering from being intubated so long last fall through his mouth. Currently the only thing Graham can have is a chew stick dipped in water. He seems to swallow the water fine (no coughing or gagging). We are hopeful he will be allowed to start taking things by mouth again soon. The soonest Duke can get him in for the study is June 30 but I plan to call some other places on Monday to get him in sooner.
Matt and I have left the house at the same time a few times when we have a good nurse and grandparents at home with Graham. We have also taken Graham out a few times (other than to the doctor) to Pullen Park twice, to church for the babies' dedication on Mother's Day, and to the library for toddler story time. We bought a sturdy swing and rigged it to hang the vent on it. It is so thrilling to see Graham get to do some normal little boy things.
Meanwhile, the twins are 7 months old! Hallie is rolling all over the place and Ben is almost sitting up on his own. They are eating three baby food meals a day. Hallie prefers the spoon to the bottle. Hallie is loud and constantly making noise and Ben has a quiet soft voice and pipes up when Hallie gets tired and quiets down. In general Hallie is intense and Ben is laid back. Its so fun to see their little personalities forming!
In other news, we are under contract for a new house! It is a one-story house in North Raleigh. Moving Graham and his equipment up and down the stairs is burdensome. He is napping in the pack n' play in the afternoon downstairs and so we all have to tip toe around. A one-story house would make life much easier! We are excited about the house but there has been a complication with the appraisal coming in way lower than selling price. We are hoping things will work out in our favor and we will still be able to get the house. We are getting a second appraisal this week.
That's most of the news lately. Here are some pics:
The most exciting news is that a Duke speech therapist gave approval for a swallow study. Graham will basically eat and drink substances with barium dye on them so we can see him swallow on xray and see whether or not he can safely swallow without aspirating. The trach in the neck can affect swallowing and his vocal cords are still recovering from being intubated so long last fall through his mouth. Currently the only thing Graham can have is a chew stick dipped in water. He seems to swallow the water fine (no coughing or gagging). We are hopeful he will be allowed to start taking things by mouth again soon. The soonest Duke can get him in for the study is June 30 but I plan to call some other places on Monday to get him in sooner.
Matt and I have left the house at the same time a few times when we have a good nurse and grandparents at home with Graham. We have also taken Graham out a few times (other than to the doctor) to Pullen Park twice, to church for the babies' dedication on Mother's Day, and to the library for toddler story time. We bought a sturdy swing and rigged it to hang the vent on it. It is so thrilling to see Graham get to do some normal little boy things.
Meanwhile, the twins are 7 months old! Hallie is rolling all over the place and Ben is almost sitting up on his own. They are eating three baby food meals a day. Hallie prefers the spoon to the bottle. Hallie is loud and constantly making noise and Ben has a quiet soft voice and pipes up when Hallie gets tired and quiets down. In general Hallie is intense and Ben is laid back. Its so fun to see their little personalities forming!
In other news, we are under contract for a new house! It is a one-story house in North Raleigh. Moving Graham and his equipment up and down the stairs is burdensome. He is napping in the pack n' play in the afternoon downstairs and so we all have to tip toe around. A one-story house would make life much easier! We are excited about the house but there has been a complication with the appraisal coming in way lower than selling price. We are hoping things will work out in our favor and we will still be able to get the house. We are getting a second appraisal this week.
That's most of the news lately. Here are some pics:
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| Not sure how Ben got Hallie's sock in his mouth! |
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| They love their daddy! |
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| Mother's Day |
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| First time painting. He like it! |
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| Whale rocker at the neighborhood park. |
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| New swing! He LOVES it. |
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| Graham wanted to get in the baby exersaucer. Ha! |
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| Toddler story time at the library. |
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| On the carousel at Pullen Park. |
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| They let us ride twice in a row without having to get off. |
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| And we rode the train! So thankful for handicap accessibility. |
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| First time in the swing. |
Saturday, May 9, 2015
Home sweet Home
Graham came home from the hospital on April 28, 6 months from his first admission last October. We are so thrilled and give God all the glory. This is such an answer to countless prayers! Graham came home in an ambulance to ensure a safe and uneventful trip. When we arrived our house was buzzing with nurses from the nursing agency, people from the DME (durable medical equipment, supplier of all medical equipment and supplies), and my parents and the twins.
We have 24/7 nursing for the first four weeks and then probably around 18hrs/day after that. This is a huge help. Matt and I are knowledgeable and capable of caring for Graham but he requires so much care that we need help in order to get everything done and eat and sleep and peek at the babies. The nurses measuring out all of his medicines is a blessing alone. Graham has been accepted into the CAP/C program which gives him Medicaid as a secondary insurance based on his medical needs and Medicaid covers the nursing! The idea of the CAP/C program is to provide support to families to care for a medically fragile child at home who otherwise would have to be institutionalized. So thank you tax paying friends for allowing us to function at home as a family!
Things have been ridiculously busy. We are trying to figure out daily routines and find a place to put all the equipment and supplies. We have a lot of different nurses to cover all the hours right now and so we are constantly orienting them and gauging their competencies. Eventually we will have more regular nurses who will be familiar with Graham and his care and that will allow Matt and I to relinquish a little more responsibility. Our parents are still helping out quite a bit and we still have the part-time nanny for the twins.
Graham is so happy to be home! His energy level and physical stamina have gone through the roof since coming home. He is pulling up and standing and attempting to walk. We are constantly untangling his lines and following him with the ventilator. We are going to be in trouble once he is walking again. He is enjoying interacting with the twins.
Thank you for all your prayers over the last several months! Please keep praying for Graham's health and recovery.
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| Graham's ride home. The last time he was in there he was on the way to Duke on ECMO. Much more joyous occasion today! |
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| He's home! |
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| Enjoying toys he hasn't seen in a while. |
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| First time in a bath tub since February! He loved it. |
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| All our babies in one place! |
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| First ever family walk! One double stroller for the twins and one for Graham and his gear. |
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| I see you! |
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| This is how he rolls. |
Stroller info in case its relevant to you:
Its a Graco Ready2Grow which is similar to the Sit and Stand but I thought it seemed sturdier. We hang the ventilator on the handlebars. The suction machine sits on the bench seat. The pulse ox and "go bag" are in the basket. We had to move the oxygen to the back step because it was too heavy for the basket. The feeding pump attached to the stroller bag and the feeding bag hangs on a stroller hook. That's about it.
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